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anthonypaulh · 2 days ago

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Rare Disease Day 2025 official video

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anthonypaulh · 2 months ago

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ITP SEPTEMBER AWARENESS CAMPAIGN

The 2024 Global ITP September Awareness Campaign is suddenly upon us again, running from September 23rd to the 29th

Here’s why it is so important and why we should get involved.

WHY IS ITP SEPTEMBER AWARENESS IMPORTANT ?

One of the many things that I have taken from my 18 year ITP journey is that we need to make more people aware of this rare illness. Like most ITP sufferers, before I was diagnosed I had never heard of it.

After my diagnosis, I couldn’t believe I had anything as serious as ITP. I thought the hospital had made a mistake. Possibly they had confused my blood test results with somebody else !

I frequently asked myself - Why me, how can I have ITP ? I have never been ill before, never smoked, never taken any drugs and always drank alcohol in moderation.

Well, so what ? ITP does not care who it chooses and when. It can develop in anyone at anytime at any age and of any ethnicity, although we do know that it occurs more in women than men. In short, ITP is not terribly fussy, we are all fair game.

In adults it is usually more stubborn than in children. It tends to disappear (often without treatment) in many children, as suddenly as it turns up. In adults it is rarer to see it go into spontaneous remission. But we can still live very full and positive lives.

SPREADING AWARENESS GETS RESULTS

There are plenty of grounds for optimism and it is clear that our ITP Awareness campaigns have borne fruit. When the annual September campaign started back in 2010 things on the purple front were very different.

Looking back to 2006 and my diagnosis there were far fewer treatments available for ITP (For example - TPO drugs had not been rolled out) few support groups, and limited numbers of blogs, social media groups, vlogs, let alone research on the scale we have now.

Until the TPO drugs were introduced the only treatments for ITP were not designed to treat ITP. All of the options were borrowed from other illnesses/conditions. Now we have the TPO drugs specifically developed for the treatment of our condition.

So things have improved dramatically and as evidence of this I would urge anyone living with ITP to watch the many video films on the ITP Support Association You Tube Channel which explain the many treatments now available.

Also on the channel are the presentations made at the Annual Convention from May 2024 so you can view the most up to date developments in ITP from some of the leading Global experts.

The whole approach to ITP is so much more positive, more patient focused and inclusive. It is far more optimistic and encouraging.

Making an effort to spread awareness has undoubtedly played a big part in moving research, treatments & knowledge further forward.

There is no better reason to get involved this September than knowing any contribution we make is improving things for us living with ITP now, and helping those who may follow us in the years ahead.

However, we cannot be complacent, it is up to us to keep making others aware of our condition. We know what it is like to live with it and we can tell others what to expect. If we don’t inform people, then who will ?

So please join in the September Awareness campaign, try to get involved even if it is to take just one or two small actions.

ITP September Awareness week runs from September 23rd to the 29th

USEFUL LINKS -

GLOBAL ITP AWARENESS WEEK -

ITP SUPPORT ASSOCIATION - YOU TUBE CHANNEL -

PLATELET DISORDER SUPPORT ASSOCIATION -

ITP AUSTRALIA and NEW ZEALAND -

#global4itp #itpaware #itpsupportassociation

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anthonypaulh · 3 months ago

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CAUGHT NAPPING - ITP and FATIGUE

Fatigue is the one subject which most often comes up on our social media platforms, online support group meetings and at our annual convention.

It is a key symptom of and is present in ITP but it is less easily recognised because there is no physical evidence to explain it and no simple way to measure it. We also know that excessive anxiety and stress can be triggers for fatigue.

So what can we do about it ?

There are many things that we can do to help combat fatigue. That said, not all of the following things will result is a completely fatigue free life if you do them. Many of these suggestions will be effective for one person but may not work as well for others.

After 18 years of living with ITP here are a few ideas. These things all play a part in my daily routine and seem to help me.

At the end of the article I have included some useful links to sources that I use. I hope they help.

BUT I emphasise that -

It is important to discuss your own individual medical situation with your specialist first before making any changes to your routines/diet/exercise etc.

SLEEP

1. Go to bed and get up at a regular time if you can. Try to follow the same sleep routine every night. Good sleep is vital allowing our bodies to rest and repair.

2. Do some mental and physical exercise during the day, especially late afternoon or early evening as it should help you sleep.

3. Only take a short afternoon nap if it doesn’t interfere with your sleep at night.

4. Avoid dozing in front of the TV in the evening. Instead try reading, listening to music, or writing. In the evening don’t overuse computers, tablets, mobile phones or over engage with social media. These things over stimulate the brain and prevent our systems from winding down towards day’s end.

5. Keep your bedroom dark (seems obvious but always close the curtains or blinds).

6. Make sure noises in the house during the night are minimised. Switch off electrical appliances that hum, buzz or disturb you. Turn off TV’s, mobile phones, lap tops, iPads well before you go to bed.

7. Make sure your bedroom is not too hot.

8. Have a warm, milky drink before you go to bed. Avoid anything with caffeine . Don’t eat anything heavy for a couple of hours before you go to bed and avoid too much alcohol.

9. Try to keep calm if you really cannot sleep.

10. If you are going to be awake don’t keep tossing and turning, get up and read for a while or listen to some music using headphones of course, then go back to bed and try to drop off.

EATING HEALTHILY

1. Eat a good, fresh, well balanced diet. It gives your body the best chance to fight fatigue. It also helps your body in many other ways too.

2. It is important to eat a good mix of protein, carbohydrates, fresh fruit and vegetables. We are all different and may have other medical issues in addition to our ITP. It is important to discuss your diet and any changes you might make with your doctor or specialist.

3. With ITP we must avoid quinine and any products that contain quinine. We also need to avoid aspirin, ibuprofen and any products that contain them.

4. Eat less salt, reduce fat and sugar intake. With ready made meals check carefully the levels of salt, fats and sugars included as they can be surprisingly high. Eat less ultra processed food, ready meals and fast foods.

5. Drink plenty of water. Dehydration causes many health problems including kidney stones, kidney infections, urinary tract infections. Dehydration makes you feel lethargic, tired, fatigued.The NHS suggested intake of water per day is between 6 and 8 glasses. During hot weather we should drink more.

6. Avoid too much caffeine. It is in many drinks, not just coffee & tea. It is in cola for example. Caffeine keeps you awake and also prompts you to urinate more so dehydrates you. It is also a stimulant and increases the heart rate amongst other things.

7. Being overweight increases fatigue and has other health risks like developing heart disease and cancer. Avoid snacking and too much sugar. Reduce fats and processed food like ready meals, take away foods like burgers, pizza, fried chicken. Eat more fresh fruit and vegetables .

8. Cook your own meals. In preparing and cooking your own food YOU know what is going into it. YOU control the amount of fats, sugars, salts that you are eating by measuring how much of it you add to your food.

9. Greens….For us ITP folk green vegetables and fruits are very helpful. Consuming spinach, kale, cabbage, lettuce, broccoli, apples and pears are very helpful in boosting the health of our immune system. Greens contain plenty of Vitamins A, C, E, and K. (they help in the clotting process).

REDUCING STRESS

1. In the modern world, it is virtually impossible to eliminate all stress. We do actually need a some stress to function properly. BUT it is being able to control, manage and limit stress levels that helps determine how well we live and how healthy we are.

2. Include some relaxation every day. Try to go out and walk every day as it is a really good way to wind down. Getting some fresh air is so beneficial, it clears the mind and helps our physical well being. It helps joints and muscles, and has many other benefits.

3. Take time every day for YOU. Listen to radio, music, read, have a warm bath, talk to family and friends, go to the movies, take up a hobby, go to a museum, visit a gallery. Do some meditation and/or breathing exercises. DO SOMETHING !

4. Turn OFF PHONES, computers, iPads, gadgets, tablets. Have some down time. Be unavailable for at least a while every day. NOTHING is more important than YOUR peace of mind and long term health. The World can wait occasionally.

5. Pace yourself, be realistic about goals you set (Try the SPOON THEORY (see links at the end of the article).

6. Stay in regular contact with family and friends and share your feelings with them. Fatigue and stress are invisible to others so talk to someone about it. Use the many ITP social media based forums/support groups and share your experiences.

7. Avoid stressful situations. It sounds ridiculous but sometimes the smallest word is one that is the most difficult to use. The word is NO. Sometimes for your own good say NO.

8. Along with saying NO, keep a planner. Make sure people around you know what that planner consists of. Don’t allow people to double book you or steel your time. Be clear what you want to do and when. YOU have to MANAGE it or it will MANAGE YOU.

9. Plan properly. The old adage of “failing to plan and planning to fail” is the truest of them all. Plan well and know what success is, know what you are aiming to do, when you are aiming to do it by, how you are going to do it. (ie set SMART GOALS).

10. Don’t be afraid to ASK for help. So many people take everything on themselves and forget that a problem aired is a problem shared.

11. Tell your doctor, ITP specialist, consultant if you are feeling stressed, fatigued, tired. You would tell them if you have a nosebleed or bruise so tell them about stress, fatigue and tiredness.

12. Join in with ITP local group meetings and social media forums. The ITP Support Association have regular local and national meetings and platforms on Facebook, You Tube, Twitter and there is also the ITP Support Association HealthUnlocked group.

13. Get a little bit of sun. It is essential for supplying our Vitamin D requirements. Not getting enough sunlight can exacerbate fatigue and feelings of tiredness. Obviously too much sun has other negative effects but a little exposure to the sun is useful.

EXERCISE

1. Many studies confirm that exercise boosts energy levels. It improves the efficiency of your heart, circulatory system, lungs and muscles and is good for the brain. It aids flexibility and helps prevent obesity and the negative health issues that may arise from it.

2. You don’t need to do too much. We are all different in what we can do . Be sensible, start slowly and discuss any plans you have to start exercising with your doctor or specialist first

.

3. Regular light exercise is proven to be beneficial to combating fatigue. Just a short walk every day is a great start, especially in nature.

4. Cycling and swimming are great alternatives to walking or jogging.

5. Don’t sit too long. Even if you move around in the garden cutting the grass, picking up leaves, just pottering around, it is all helpful.

6. Getting some fresh air & it will help to relieve stress, improve your sleep and reduce tiredness.

Many of these suggestions are common sense and probably things we all think that we are already doing. The most important thing is that it should not become too onerous because if it is then you will not stick to it. You have to make it fun, simple and really want to do it.

Good luck and best wishes

Anthony Heard 12/8/2024

USEFUL LINKS

THE SPOON THEORY -

https://www.gwh.nhs.uk/media/rk2krmbw/fatiguemindmaptrifold1604.pdf

WATER, DRINKS and HYDRATION -

NHS EATWELL GUIDE -

NHS - EVERY MIND MATTERS - How to recognise and cope better with Stress-

FOOD FOR LIFE - Book by Tim Spector

INSIGHT TIMER - BREATHING , MEDITATION, MINDFULNESS -

SMILING MIND - BREATHING, MINDFULNESS -

BALANCE - BREATHING, MEDITATION, IMPROVING SLEEP -

GROW MODEL for SMART GOAL SETTING -

ITP SUPPORT ASSOCIATION YOU TUBE CHANNEL - numerous videos on Fatigue -

FUTURE LEARN via THE OPEN UNIVERSITY - numerous FREE online short courses on many subjects including NUTRITION and HEALTH -

#itpaware #global4itp #itpsupportassociation

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anthonypaulh · 7 months ago

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CONVENTIONAL CONVENTION - ITP SUPPORT ASSOCIATION LONDON 2024 - May 11th -

Since the turmoil that Covid -19 inflicted on us, we have all had to do many things differently. It is clear that life has changed and we have all come to do things in new ways. Adapt, evolve, survive seems to cover it.

We have, here at he ITP Support Association, not been immune (no pun intended) to the challenges and demands for change that the pandemic has brought. So we have been running regular online local support groups via the ZOOM facility, to combat some of the difficulties that the pandemic threw our way. And we continue to do so with great success.

In addition to the local support groups we were also obliged to hold three annual conventions online too. So the 2020, 2021 & 2022 conventions were switched to an online basis to ensure that we kept safe, secure & away from the ravages of Covid.

The 2020, 2021 and 2022 online conventions were hugely successful and were attended by record numbers of people online from all across the globe. But even so, there is nothing quite like a face to face event and last year we returned to our usual annual CONVENTIONAL CONVENTION and we will do so again this year on May 11th at

Cavendish Conference Centre, Cavendish Venues, 22 Duchess Mews, London W1G 9DT.

Just 5 minutes from Oxford Circus Tube Station

In my experience of attending the face to face annual conventions in the past , I can only say that they are tremendously informative, inspiring and helpful. There is just no substitute for being in the moment with other people who are going through the same trials and tribulations.

I have been living with ITP for over 17 years and I can still remember attending my first annual convention. It felt so reassuring to be able to talk to other people who had been through some of the things that I had encountered. It made me feel more confident about living better with my purple problem.

The Conventions have also introduced me to fellow ITP patients from across the globe who I am in regular contact with to this day. We are all fighting our own individual battles with this enigmatic condition wherever we are from BUT we are stronger together by sharing knowledge, information and supporting each other.

The convention always brings together some of the leading medical professionals in ITP but, I think just as importantly it also provides a platform for us ITP patients to talk to each other, swap our experiences and encourage each other. No man is an island and all that !

It is wonderful to know that we will be able to have a Conventional Convention again this year but we also appreciate that some of our members and followers prefer a non face to face way of keeping in touch. For that reason we are continuing our programme of online local support groups via Zoom and also why we are available on many social media platforms.

Of course we also have our quarterly magazine The Platelet as another way of communicating between us ITP folk.

Our aim at the ITP Support Association is to be available wherever people want to connect with us. As ever it is different things for different people and we try to cover as many bases as we can.

We can be found on the following social media platforms -

LinkedIn, TWITTER, Facebook, Instagram, You Tube, HealthUnlocked which can all be accessed via the main ITP Support Association website -

https://itpsupport.org.uk

Our local support groups online are listed at the following link -

The next round of these groups will be announced soon

https://itpsupport.org.uk/itp-group-meetings-new-dates-added-meeting-schedule/

Tickets for the 2024 Annual Convention are available via the following link - (There are a few left but don’t leave it too late to book your place).

https://itpsupport.org.uk/itp-support-association-annual-patient-convention-2024/

Wherever and whenever you wish to connect with us, we hopefully have a platform for everyone.

#ITPAware #ITPAwareness #ITPSupportAssociation #ITPAustralia

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anthonypaulh · 8 months ago

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LOOKING IN THE MIRROR

Looking in the mirror

It’s someone else I see

The spectre of my former self

Before my ITP

But just no point in mourning

The person I used to be

Focus now on being

The best, new version of me

So I keep on keeping on

And try to make others aware

Of the day to day struggles of

Living with a condition that’s just so rare

APH

March 13th 2024

It may not be Wordsworth, Coleridge or Byron but I cobbled together these words about my ITP at 3am a few days ago having been woken up (as I often am) by my Mycophenolate Mofetil.

I am sure that many ITP folk will recognise and identify with my verse.

#ITPAware #ITPAwareness #RareDiseases #RareDiseaseAwareness @RareDiseaseUK @ITPSupportAssociation @GeneticAllianceUK

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anthonypaulh · 1 year ago

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RARE DISEASE DAY - FEBRUARY 29th 2024

The Rare Disease Day event this year will be bigger than ever and has numerous opportunities for us to get involved. Even by making small contributions we can all help to spread awareness and make the campaign a huge success.

The annual Rare Disease Day campaign has been going on now every February since 2008 and every year the event grows bigger and more far reaching.

Some Facts About Rare Diseases

A rare disease is defined by the European Union as one that affects less than 1 in 2000 of the general population. ITP is most definitely one of those rare diseases. Overall though there are about 6000 known rare diseases but new conditions are being discovered all the time.

Over 300 million people World wide are living with a rare disease and that is 3.5 to 5.9 per cent of the Global population.

In the UK, a single rare disease may affect up to about 30,000 people. The vast majority of rare diseases will affect far fewer people – some only a handful, or even a single person. To put ITP into perspective, it is estimated that there are about 4000 ITP sufferers in the UK at any one time.

One of the difficulties of understanding ITP numbers is that many people may be suffering with it without knowing it. I had ITP symptoms (bruising and terrible fatigue) for a year before I went for a check up in 2006.

I had no idea that I had anything serious wrong with me. About 30 percent of ITP sufferers are diagnosed whilst being examined by a doctor for something else.

It is estimated that 1 in 17 people will be affected by a rare disease at some point in their lives. This is about 3.5 million people in the UK and 30 million people in Europe. Building awareness is so important because there is no cure for many rare diseases and some go undiagnosed for ages.

We ITP sufferers know the frustrations & uncertainty around there being no cure for our illness, albeit we do have numerous treatment options. We also appreciate the difficulties of diagnosis because ITP is diagnosed by exclusion, where all other potential causes for our reduced platelet counts are ruled out before ITP is ruled in.

My own ITP diagnosis took 8 hours on a very worrying Friday night in my local hospital. That is by no means as wretched as some diagnosis experiences but nonetheless it was still pretty harrowing. I have had better Friday nights !

What I Will Be Doing for the Rare Disease Day Campaign ?

I will be busy posting out updates every day of February on all the ITP Support Association social media platforms and on my own personal forums too.

Please help to spread any postings and updates that I make on social media to as wide an audience as possible by re-tweeting, liking & re-posting items as often as you can. This campaign will be successful if we spread awareness as far and wide as possible. We have to make some noise !

So Why Get Involved with the Rare Disease Day Campaign ?

Rare Disease Day improves knowledge amongst the general public of all rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. By helping the campaign we are helping ourselves to better treatment, research, diagnosis and support for all rare disease patients and their families.

It also helps that the ITP Support Association have always supported and promoted the Rare Disease Day campaign since 2010 as we have had some great recognition within the rare disease community for the work that we are doing in ITP.

For example during the Rare Disease Day campaign for 2023 we were invited to do a TWITTER takeover and it was a great opportunity to raise awareness for ITP and the ITP Support Association. I enjoyed doing it and it was a great success. I received lots of excellent feedback from other rare disease patient support groups.

So please check out the links below to keep in touch with the 2024 campaign and do join in.

However small your action might be, it will definitely help.

USEFUL LINKS for the RARE DISEASE DAY CAMPAIGN

Rare Disease Day 2024 - Links to All You Need to Know

What Is rare Disease Day ? - https://www.rarediseaseday.org/what-is-rare-disease-day/

Rare Disease Day 2024 Official Video - https://www.rarediseaseday.org

Sign up to get regular updates on the Rare Disease Day Campaign -

Rare Disease UK - https://www.raredisease.org.uk

EURORDIS - Rare Disease Europe - https://www.eurordis.org

How to Share Your ITP Story with the Rare Disease Day campaign - https://www.rarediseaseday.org/share-your-story/

My ITP Story on Rare Disease Day Website - https://www.raredisease.org.uk/rare-stories/anthony/

The ITP Support Association on Rare Disease Day Website - https://www.raredisease.org.uk/?s=itp&ct_bot_detector_event_token=04a107acb305a8c08c7f93c40903f0e4363ea1b76da4556beb77ae6971b6846d

Social Media Platforms where I will be posting Rare Disease information throughout February 2024 -

MY PERSONAL TWITTER -

My Purple Patch @Patch1Purple

ITP SUPPORT ASSOCIATION -

Website - www.itpsupport.org.uk

Twitter - @ITPsupportAssoc

Facebook - https://www.facebook.com/ITPSuppAssoc

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anthonypaulh · 1 year ago

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A DATE for YOUR DIARIES JANUARY 11th 2024 - THE IMPORTANCE of KEEPING IT LOCAL

I thought that it would be useful to remind everyone with any interest in ITP of the importance of keeping it local.

We at the ITP Support Association have been holding regular local support group meetings online via ZOOM for quite some while now and especially more so since the outbreak of Covid - 19.

These meetings have been really well received and attended with many of the regular ITP topics discussed. Anyone with any interest in ITP may join us but you must pre-register for the event.

Patient queries are answered by a member of the ITP Support Association medical panel who kindly afford us their time for these events.

The link below will take you to the full list of our medical panel - https://itpsupport.org.uk/medical-advisors/

For anyone who wishes to attend the next local support group meeting it will be held on January 11th 2024 . On the evening we will have Dr Will Lester on hand to answer patient questions and concerns.

Having medical experts available, is of course such a wonderful benefit but in addition the local support groups give us all a chance to share our own experiences and concerns with each other.

Being able to hear what other ITP patients have experienced on their own journeys gives us all an insight into things that we might not ourselves have come across and it also often acts as a reassurance that we are not alone in having this enigmatic illness to deal with.

If you have not attended any of our online support groups I would highly recommend that you give one a try. You can get to see all of our previous such meetings on our You Tube channel at the following link -

A huge thank you to all of our medical experts for giving us their time so freely and also to Mervyn Morgan CEO of the ITP Support Association for hosting and organising plus to Derek Elston Trustee and Rhonda Anderson ITP Patient Mentor for sharing their ITP experiences.

#itpaware #global4itp #itpsupportassociation

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anthonypaulh · 1 year ago

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THE CURIOUS CASE of CLUMPING PLATELETS

In January 2015, I encountered yet another blast of an ITP storm in the form of CLUMPING PLATELETS. Until this strange and unexpected element hit me I had never heard of it before. Like ITP itself it knocked me off course until I managed to get it explained to me.

The first time I heard the phrase clumping platelets, was on January 26th 2015 following my routine blood test on January 15th. I got a telephone call from the hospital advising me that the blood test I'd had was inconclusive. They couldn't actually get a definite platelet count from it because my platelets (God love them) had clumped.

This was a complete bolt from the blue and it took the wind out of my sails a bit. Clumping platelets are actually quite common and to the health professionals they are easy to understand. But to us ordinary folk it is disconcerting and almost incomprehensible until we get it explained in plain language. I suppose that is the case with so much about ITP and indeed many illnesses.

So in a slightly apprehensive mood, I returned to the hospital on January 28th to get another blood test, hoping that this time I would not clump. On arrival the senior nurse explained that platelet clumping is quite common, albeit in my own case I'd never had it before in my 9 purple years .

The nurse reassured me that although my blood test of January 15th did not return a conclusive platelet count, my specialist had analysed the blood sample manually and estimated that my count was over 100. So to an extent that settled my anxiety somewhat, as clearly I was safe for the time being. But nonetheless I was curious about this clumping thing.

My curiosity grew further when the blood test that I had on January 28th was also inconclusive, as my platelets had clumped again. Once more my specialist analysed that blood sample manually and confirmed that he could see plenty of platelets and estimated that my count was still well over 100. Exactly the same happened with yet another blood test on February 4th. Curious indeed.

So what exactly is platelet clumping and why does it occur ? The way I understand platelet clumping is that when a blood test is done a chemical is routinely used in the test tube on the blood sample. The chemical used in most cases is EDTA ( Ethylenediamientetraacetic Acid ) .

Sometimes, as happened in my case in January and February 2015, platelets clump in the test tube when EDTA is used. So sort of understandable but nevertheless still curious. I kept wondering why it had never happened to me before in over 9 years and probably hundreds of blood tests. I asked this very question of my specialist but he simply could not say.

Blood samples can be tested using different chemicals to get a platelet count, so if EDTA gives an inconclusive result because of clumping other chemicals can be employed in the blood test to get a count.

So when I had yet another blood test on February 24th I had 3 samples taken. One of the samples was to be tested with EDTA, the second to be tested in Citrate (an alternative chemical ) and the third to be tested using Lithium Heparin (yet another chemical ).

The results came back completely satisfactory this time, showing a platelet count of 139 and amazingly they did not clump in the EDTA.

At a subsequent follow up blood test on March 6th, again I provided 3 samples to be tested with the 3 different chemicals as I had done on February 24th.

Once again the results were clear, the EDTA solution did not give clumping platelets and I returned a count of 125. Another blood test on April 28th using the EDTA solution gave me a platelet count of 159 and again no clumping issues. In fact the clumping platelet problem did not resurface ever again and has not been an issue for me since.

My personal view is that in January/February 2015, the laboratory carrying out the blood tests at my hospital must have been doing either 1) something different or 2) not doing something they had previously been doing or 3) they may have even doing something incorrectly compared to previous years.

It is a very strange coincidence that after 9 years of ITP , numerous blood tests and check up's, I had never clumped before, and indeed apart from January/February 2015, I never clumped again.

The whole thing remains a mystery ...The Curious Case of the Clumping Platelets. Perhaps I should have got Holmes and Watson on the case !

#itpaware #global4itp #itpsupportassociation

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anthonypaulh · 1 year ago

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GETTING my TEETH into ITP and DENTAL TREATMENT

Before my purple journey started in 2006 a routine dental appointment would usually be completely straightforward, until then I had never really given much thought to what ITP sufferers should do in respect of such matters.

Would ITP make any difference to my dental treatment ? What should I tell my dentist about my illness, my medication, my current and future treatment ? Did he need to know ? Why did he need to know ? Could he treat me as a normal patient ? Could he treat me at all ?

For most people the merest hint of a dental appointment usually sets the collies wobbling. For some it's the buzzing of the drill, for others it's the smell of antiseptic or the taste of the mouth wash. Whatever turns us off, dental appointments are not much fun.

Luckily I have always had excellent treatment from my dentist. I can't say that a visit to my dentist has ever held any concerns at all. I guess I'm lucky in this respect. So a visit to my dentist as an ITP patient wouldn’t be any different, would it ?

Well, er, yes actually, it's very different. Just to make me slightly anxious I had heard that a number of ITP patients indicated that they had great difficulty in finding a dentist who had any idea what ITP actually was. Surely things were not this bad ? It was not Victorian England where some people had wooden false teeth and some did DIY dentistry with pliers and string tied to door handles. Hard times indeed.

The importance of getting regular dental checks is so important whether or not you have ITP but once under the purple influence it becomes even more vital. The phrase prevention rather than cure always comes to the fore when thinking about dental checks but with ITP it is absolutely imperative.

The last thing any of us with ITP needs is to have intrusive dental treatment, which is obviously going to be more difficult if we have a low or fluctuating platelet count. So by getting checked regularly and making sure we keep to good daily routines for oral hygiene, hopefully we can avoid treatment for things like fillings, gum disease and even extractions.

I knew that I had to tell my dentist that I had ITP. I had to advise him what treatment I had received, what drugs I had been taking , what my latest platelet count was and what treatment regime I was gong to continue with. I knew all this because I had obtained a really useful leaflet from the ITP Support Association. It was very soberly entitled... Protocol for dentists treating patients with Thrombocytopenia. A protocol sounded like something the UN would have drawn up. But nevertheless it was extremely helpful and I gave a copy to my dentist at my appointment.

At the dental appointment, as ever, my dentist made things as easy as proverbial pie. He is just very good at what he does. He's so professional, well informed, up to date with all the latest technology and information (He didn't even pay me to say any of that ! ) I told him that since we'd last met I'd been diagnosed with something called ITP. Just like everyone else I’d told about my ITP, I thought he'd say something along the lines of ...... Well you don't look ill, I've never heard of it but I'm sure you'll be fine.

What he actually said was that although he didn't have any other patients with ITP, he'd heard of it. He would treat me in a similar way to a haemophiliac, although he realised that there were many, many differences. He switched on his laptop and we looked up ITP. I'd given him my stodgily named Protocol for dentists leaflet already but he also looked up the ITP Support Association website there and then.

He took notes as I told him my purple history to date. He recorded details of my drugs...Prednisolone, Omeprazole, Alendronic Acid, Rituximab, Mycophenolate Mofetil, platelet count history, current treatment regime, name and contact details of my specialist and any other medical history of relevance.

I didn't have any other medical history apart from ITP so , that was pretty much that. Drama over, we just needed to do the dental bit. Just open wide, say cheese and hope for the best !

It may seem obvious that our dentist needs to know our platelet count. If any treatment is needed, especially an extraction, a platelet count under 50 may preclude that treatment from being carried out.

If you are going to have any treatment it is sometimes necessary to get a blood test to check your platelet count before undergoing that treatment and with some people it may also be necessary to consult with your ITP specialist/haematologist.

Advising our dentists of what medication we are currently taking and have taken for the last 12 months is also vital. Any drugs the dentist uses to anaesthetise us for example, may clash with any medications we have taken for our ITP or any other medical condition for that matter.

Another problem is that should we encounter any pain following any dental interventions the only painkillers we can take are Paracetamol. ITP sufferers must avoid Aspirin or Ibuprofen. Having purple in your life gives you so many things to think about.

For further information on all things ITP the following links are to the most reliable and up to date sources -

The ITP Support Association - www.itpsupport.org.uk

The Platelet Disorder Support Association - https://www.pdsa.org

ITP Australia - https://itpaustralia.org.au/

#itpaware #global4itp #itpsupportassociation #RareDiseases #RareDiseaseUK #Autoimmuneillness

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anthonypaulh · 1 year ago

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WHERE to GET RELIABLE & UP to DATE INFORMATION on ITP

ITP SUPPORT ASSOCIATION on Platforms 1 to 7

I get a number of enquiries and requests asking where the ITP Support Association can be found & where else you can get reliable, up to date information on our enigmatic illness ITP.

So by way of a reminder you can locate the best information on the following seven platforms for the ITP Support Association.

The main website and the place to start for all up to date & reliable ITP information - www.itpsupport.org.uk

Facebook - https://www.facebook.com/ITPSuppAssoc/

You Tube - with 90 ITP related videos FREE to view - https://www.youtube.com/@ITPSAUK/videosn

TWITTER - https://twitter.com/ITPSupportAssoc

Instagram - https://www.instagram.com/itpsupportassoc/

LinkedIn - https://www.linkedin.com/groups/13990747/

HealthUnlocked - a platform written by those living with ITP for those living with ITP - https://healthunlocked.com/itpsupport

And finally if you would like to become a member of the ITP Support Association with the many benefits it brings you can join at the following link - https://www.itpsupport.org.uk/index.php/en/join-us?filter_plan_ids=6,2,5,1,4,1,2,4,5,6

As for other reliable sources the following links are also excellent -

The Platelet Disorder Support Association - https://www.pdsa.org

ITP Australia - https://itpaustralia.org.au/

Rare Disease UK - https://www.raredisease.org.uk/

You can follow my other social media platforms at the following -

TWITTER -

MY PURPLE PATCH - @Patch1Purple

ANTHONY HEARD - @AnthonyH7

FACEBOOK -

https://www.facebook.com/anthony.heard.7

LINKEDIn -

https://www.linkedin.com/in/anthony-heard-acib-ba-0874a4192

#itpaware #global4itp #itpsupportassociation

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anthonypaulh · 1 year ago

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FOLLOWING MY GUT INSTINCT

OMEPRAZOLE and the potential problems with Proton Pump Inhibitors

For many of us living with ITP one of the drugs that we may have encountered on our purple journey is Omeprazole.

Just one of a class of drugs known as Proton Pump Inhibitors (see link at the end of this article for a full list ) , Omeprazole reduces the amount of acid our stomach makes.

Unfortunately when we are prescribed Prednisolone and in my case Mycophenolate Mofetil (MMF) for our ITP it can cause other potential problems like acid reflux, indigestion, heart burn.

So Omeprazole is mainly used to help reduce the acidic effect of steroids and other drugs like MMF on the stomach. For patients started on steroids such as Prednisolone or MMF the use of Omeprazole is often advised to prevent ulcers from forming in the stomach or gut lining.

The Omeprazole dose of a 20mg tablet once a day before breakfast is the regime many of us ITP folk will be familiar with.

As previously stated Omeprazole is a type of medicine called a proton pump inhibitor (PPI). Proton pumps are enzymes in the lining of our stomach that help it make acid to digest our food.

Omeprazole prevents proton pumps working properly which reduces the amount of acid the stomach makes thus balancing out any excess acid which we may produce from Prednisolone or MMF use.

So far so good BUT - in addition to reducing stomach acid, unfortunately Proton Pump Inhibitors can also do potential harm.

Now this does not mean that they always will be damaging because we are all made differently and respond to drugs in various ways. Short term usage of the drug usually does not cause any significant issues.

The potential problems that Omeprazole and Proton Pump Inhibitors may cause (especially if taken for long periods) are as follows-

Mal absorption of certain key Vitamins like Vitamin B12 and Vitamin B9 (Folate)

Low Magnesium levels

Gut infections

Bone fractures

Iron deficiency

Calcium deficiency

Nausea, vomiting, constipation, tummy pain

Kidney and liver problems

For a fuller list please see the attached two links….

A.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7887997/

B.https://www.nhs.uk/medicines/omeprazole/side-effects-of-omeprazole/

Now there is nothing to say that any of these issues will manifest themselves in those of us on Omeprazole (especially short term) but it is my belief that is worth knowing what the issues are and checking with our specialists how the drug may be impacting our wider health.

In my case it was back in 2020 that I had a slight fall in my Vitamin D and Vitamin B9 (Folate) count. My specialist could not instantly tell what might have caused this (it often happens because of a change in diet) but we ended up feeling that my being on Omeprazole was probably the reason why I was struggling to absorb enough of these key vitamins from my diet.

I was prescribed Vitamin D and Vitamin B9 (Folate) supplements which I still take daily even though I have not been taking Omeprazole since 2020. I now take Gaviscon if I get any signs of indigestion or acid reflux. My Vitamin D and Folate levels are well above normal now and my specialist tests them half yearly.

Just to confirm that my ITP is being controlled by Mycophenolate Mofetil which does cause acid reflux/indigestion but nowhere near as much as the Prednisolone did in my case.

So hopefully my experience back in 2020 will be helpful for others who are taking Omeprazole or any of the other Proton Pump Inhibitors (PPI’s).

A Full List of PPI drugs in the UK is available at the following link - https://patient.info/digestive-health/indigestion-medication/proton-pump-inhibitors

#itpaware #global4itp #itpsupportassociation

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anthonypaulh · 1 year ago

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IN PLATELETS AGE and SIZE REALLY DOES MATTER

All of us purple people know that ITP is a condition where, even though our platelet production is increased from our bone marrow, our misguided immune system destroys platelets even more rapidly hence leading to thrombocytopenia and the tell tale symptoms we all recognise.

Right so far are you with me ? OK…. well we have also discovered that in general and I say the words again to emphasise the point..IN GENERAL, we folk with ITP do not have the same bleeding tendency as those with the same degree of thrombocytopenia caused by a bone marrow issue/problem.

So we purple folk in general don’t tend to bleed as much as those with bone marrow/platelet production issues. Our problem is one of destruction rather than production (in general terms). Also the platelet count in us purple people is actually a poor predictor of whether or not we are actually likely to suffer any bleeding be it internal (brain bleeds or internal organs) or external (nose bleeds, gum bleeds etc).

So what does all this mean ? In a nutshell in ITP because we are having to produce so many more platelets because our misfiring immune systems keeps destroying them it means a much higher proportion of our platelets are YOUNG. Well so what one might say ? Well so good actually. Younger platelets are more capable of stopping bleeding than older ones and this may explain the general tendency for less bleeding in ITP patients than those with platelet production/bone marrow deficiencies.

So in platelets the younger the better and so platelet age really is a definite factor. But it’s not just about age, it’s also a size issue too. Platelets decrease in size as they get older so the younger platelets are bigger and are therefore more effective in the clotting process.

Now there is a test which can be done to measure the average size of our platelets called the Mean Platelet Volume (MPV). It takes into account the different sizes of platelet circulating in our blood. So if the younger platelets are more predominant our MPV will be greater but if the number of younger platelets is fewer our MPV will be lower.

It is as if the ITP Gods have granted us a back handed bonus, a compensatory gift of younger, bigger more efficient platelets in exchange for mistakenly destroying them. One heck of a quid pro quo !

In ITP sufferers our MPV is normally higher than average (again I use the words normally higher with caution) . Now this measure should not be looked at in isolation and cannot be relied upon in itself BUT it can be viewed at in combination with other evidence/symptoms that the patient is showing.

Just to get a bit more complicated here is another set of initials to get thinking about in respect of the age of our platelets…. IPF which stands for Immature Platelet Fraction. This looks at the number of young platelets circulating in our blood system and it can give an indication of whether or not there is a likelihood that even with a low platelet count there is likely to be bleeding or not.

With IPF and MPV all this is just another aspect of estimating/predicting whether or not the patient is at risk from bleeding or at least getting a better idea of the bleeding propensity.

So what can we conclude about the age of our platelets ?

1. In general YOUNG platelets are more plentiful in ITP sufferers because we produce more of them to replace those being destroyed by our misfiring immune systems.

2. YOUNG platelets tend to be bigger and therefore are more efficient in the clotting process.

3. Testing can be done in the lab to check the volume of YOUNGER platelets and age of them in our systems. Hence it gives more information to our specialists when they consider whether or not we each have a greater or lesser propensity to bleed even with lower platelet counts.

4. This is an area still developing all the time and we are getting more ammunition to be able to design treatments specifically for patients as individuals.

5. Age and Size really does matter with platelets.

As we are discovering more about our illness we are hopeful to better tailor treatments to the individual sufferer with more precision .

#itpaware #global4itp #itpaware itpsupportassociation mypurplepatch @patch1purple

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anthonypaulh · 1 year ago

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At this time of year we ITP folk in the Northern hemisphere need to consider taking a Vitamin D supplement as we say goodbye to sunny days and hence the natural absorption of Vitamin D from those rays.

The article above explains why Vitamin D is important, where we can get it from and who may be at risk when not getting enough of it.

SUNSHINE on A RAINY DAY - The Importance of Vitamin D

For those of us living in the Northern Hemisphere we are all too aware of our long Winters. That miserable time between the end of September and the beginning of April when we are starved of sunshine. All our pictures seem to fade to black and white !

Here in the UK, one of our national pastimes is talking about the weather but I am sure that few people actually know the implications of a lack of sunshine on our health.

It is our reduced supply of vitamin D that is impacted by the lack of sunshine that we get during the Winter months that causes us a problem. It can have potentially dangerous implications for our health.

We can synthesise vitamin D3 in our skin from sunshine and this is our main source of vitamin D. However, in the UK and anywhere in the Northerly latitudes for that matter this is only possible in the summer months (between April and September) during the hours around midday (around 11am-3pm), when sunshine contains sufficient UVB light (290-315 nm).

During the winter months (October to March), vitamin D can only be obtained from our diet (and supplements), but only a relatively small number of foods contain vitamin D.

So why is Vitamin D important to our health and what problems can it lead to if we do not obtain enough of it ?

Vitamin D is needed for maintaining the balance of calcium and phosphorus in the body, It is essential for keeping bones and muscles healthy. Vitamin D has also been investigated for its’ potential role in reducing the risk of diseases, including diabetes, high blood pressure, cardiovascular disease, cancer and Covid-19 and for its’ role in immunity as a whole. But clear evidence is unproven in many of these areas and more research is ongoing.

Vitamin D deficiency can lead to a loss of bone density which can contribute to osteoporosis and broken bones.Severe vitamin D deficiency can also lead to other diseases. In children, it can cause rickets which is a rare disease that causes the bones to become soft and bend. In adults, severe vitamin D deficiency leads to osteomalacia which causes weak bones, bone pain, and muscle weakness.

There are surprisingly few sources of vitamin D in our food and so without the sunshine levels that we get in our Summer months we will almost certainly see our levels become low during the Winter months, unless we take a supplement.

Good sources of vitamin D from our food are -

Oily fish – such as salmon, sardines, herring and mackerel

Red meat

Liver

Egg yolks

Fortified foods – such as some fat spreads and breakfast cereals. Check the labels !

Without sunshine on our many rainy days we are well advised to take a vitamin D supplement. This is the reason why the UK Government has offered free of charge, a supply of vitamin D supplement tablets to all those of us who are in the clinically extremely vulnerable group during the current Covid-19 pandemic.

For those of us in the clinically extremely vulnerable group it means that because we are spending more of our time indoors (even during the Summer months) we are more likely to be short of vitamin D and this will of course have implications for our overall health.

I take a vitamin D supplement during the Winter and always have done. From October 1st until May 1st I take a 10ug vitamin D supplement tablet. This is certainly supported by Public Health England who recommend a supplement is taken during these months, when vitamin D synthesis in the skin is not possible.

At risk groups, including people who do not often go outdoors, who reside in an institution such as a care home, or those who normally cover most or all of their skin when outdoors, should take a daily 10 microgram vitamin D supplement throughout the year.

People with dark skin, including individuals from Black and Minority Ethnic (BAME) groups (e.g. individuals of African, African-Caribbean or South Asian background), should consider taking a vitamin D supplement all year round, as they may not be able to get enough vitamin D from sunlight exposure during spring and summer.

So there we have it, when there is no sunshine because of our rainy or Winter days, we need to do something to boost our vitamin D levels. Taking a supplement of 10ug per day should be sufficient for most of us during the Winter months. This should make up for the lack of the vital vitamin D we can obtain form the sunshine we might get during the Summer. Eating a sensibly, balanced diet will also help too.

Sunshine on a rainy day ? Well definitely, possibly, maybe but do take a vitamin D supplement just to make sure !

Some useful sources of information on Vitamin D

https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d/

https://www.bbc.co.uk/news/health-52371688

https://www.bbc.co.uk/news/health-55108613

#global4itp #itpaware #itpsupportassociation #mypurplepatch

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anthonypaulh · 1 year ago

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ITP September Awareness Campaign

The 2023 Global ITP September Awareness Campaign is upon us . Here’s why it is so important and why we should all make an effort to get involved.

Please check the ITP Support Association website at www.itpsupport.org.uk and www.globalitp.org for further details of how to take part.

WHY IS ITP SEPTEMBER AWARENESS IMPORTANT ?

One of the main lessons that I have taken from my ITP journey is that we all need to make more people aware of this very little known, enigmatic illness. Like most ITP sufferers, before I was diagnosed with it, I had never heard of it and frankly I really couldn’t believe that I had it.

After my diagnosis , I just couldn’t believe that I had anything as serious as ITP. I thought that the hospital had made a mistake. Maybe they had confused my blood test results with somebody else. Once it became clear that I really did have ITP, then I got angry.

Why me, how can I have ITP ? I had never been ill before, never smoked, never taken any drugs and always drank alcohol at sensible levels. I had lived my first 46 years without ever being in a hospital for anything other than a few stitches from football/soccer related injuries.

Well, so what ? ITP does not care much about who it chooses and when. Unfortunately it can develop in anyone at anytime at any age and of any ethnicity, although we do know that it occurs more in women than men. In short, ITP is not terribly fussy, it can choose anyone, we are all fair game.

In adults it is usually more stubborn than in children. It tends to disappear (often without treatment) in many children, as suddenly as it turns up. In adults it is rarer to see it go into spontaneous remission. But it doesn’t mean that we cannot live very full and positive lives.

SPREADING AWARENESS GETS RESULTS

There are certainly plenty of grounds for optimism and it is clear that our ITP Awareness campaigns have borne fruit. When the annual September campaign started back in 2010 things on the purple front were very, very different.

When I think back to 2006 and my diagnosis there were far fewer treatments available for ITP (For example - TPO drugs had not been rolled out) very few support groups, and certainly very limited numbers of blogs, social media groups, vlogs, let alone research on the scale we have now.

It is worth remembering that until the TPO drugs were introduced the only treatments available for ITP WERE NOT actually designed to treat ITP. All of those options were actually borrowed from other illness/conditions and were not specifically designed to treat ITP at all. Now we have the TPO drugs which have been specifically developed for the treatment of our condition.

So things have improved dramatically and as evidence of this I would urge anyone living with ITP to watch the many video films on the ITP Support Association You Tube Channel which explain the many treatment options now available to us.

The whole approach to ITP is so much more positive, more patient focused and inclusive. It is just so much more optimistic and encouraging.

Making an effort to spread awareness has undoubtedly played a big part in moving research, treatments & knowledge further forward.

There is no better reason to get involved this September than knowing any contribution we make is improving things for us living with ITP now, and helping those who may follow in our footsteps in years ahead.

However, we cannot be complacent, it is up to us to keep making others aware of our condition. We know what it is like to live with it day to day and it is we who can tell others what to expect. If we don’t inform people, then who will ?

So please do help in this September Awareness campaign, try to get involved even if it is to take just one or two small actions.

September awareness week runs from the 25th to the 29th.

#ITPAware #ITPAwarenes #ITPSupportAssociation

#global4itp

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anthonypaulh · 2 years ago

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KEEPING IT LOCAL

After another really helpful and interesting online local ITP Support Association group meeting last night I thought that it would be useful to remind everyone with any interest in ITP of the importance of keeping it local.

We have been holding regular local support groups online via ZOOM for quite some while now and especially more so since the outbreak of Covid - 19.

These meetings have been really well received and attended with many of the regular ITP topics discussed.

Patient queries are answered by a member of the ITP Support Association panel who kindly afford us their time for these events. So for example last evening we had Dr Catherine Bagot from Glasgow Royal Infirmary to provide us with the benefit of her expertise.

For anyone who wishes to attend the next local support group meeting it will be held on November 30th at 7pm GMT but you must pre register first via the following link -

https://www.eventbrite.co.uk/e/england-and-wales-itp-patient-virtual-meeting-tickets-453779746437 .

On the evening we will have Professor Adrian Newland CBE and Dr Will Lester on hand to answer patient questions and concerns.

Having medical experts available to answer questions and worries, is of course such a wonderful benefit but in addition the local support groups give us all a chance to share our own experiences and concerns with each other.

Being able to hear what other ITP patients have experienced on their own journeys gives us all an insight into things that we might not ourselves have come across and it also often acts as a reassurance that we are not alone in having this enigmatic illness to deal with.

If you have not attended any of our online support groups I would highly recommend that you give one a try. You can get to see all of our previous such meetings on our You Tube channel at the following link -

https://www.youtube.com/channel/UCRkHWfVYAA1KKabjFI4L37g/videos

A huge thank you to all of our medical experts for giving us their time so freely and also to Mervyn Morgan CEO of the ITP Support Association for hosting and organising plus to Derek Elston Trustee and Rhonda Anderson ITP Patient Mentor for sharing their ITP experiences.

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anthonypaulh · 2 years ago

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A RETURN to THE CONVENTIONAL CONVENTION

Since the turmoil that Covid -19 inflicted on each and every one of us, we have all had to do so many things differently. It is clear that life has changed in so many ways and we have all come to do things in new ways. Adapt, evolve, survive seems to cover it.

We have, of course here at he ITP Support Association, not been immune to the challenges and demands for change that the pandemic has inflicted. So many people, reading this article will know that we have been running regular online local support groups via the ZOOM facility, to combat some of the difficulties that the pandemic threw our way.

In addition to the local support groups we have also been obliged to hold the last three annual conventions online too. So the 2020, 2021& 2022 conventions were switched to an online basis to ensure that we kept safe, secure & away from the ravages of Covid.

It has to be said that the 2020, 2021 and 2022 online conventions were hugely successful and were attended by record numbers of people online from all across the globe. But even so, we have had many requests from our members and followers to get back to more face to face events.

In my experience of attending the face to face annual conventions in the past , I can only say that they are tremendously informative, inspiring and helpful. There is just no substitute for being in the moment with other people who are going through the same trials and tribulations.

I have been living with ITP for over 16 years now and I can still remember attending my first annual convention. It just felt so reassuring to be able to talk to other people who had themselves been through some of the things that I had encountered. It made me feel more confident about living better with my illness and gave both me and my wife and family a huge boost. At last we had other people who knew what we were talking & worrying about.

The events have also introduced me to fellow ITP patients from across the globe who I am in regular contact with to this day. It reinforces for me the fact that we are all fighting our own individual battles with this enigmatic condition wherever we may be from BUT we are stronger together by sharing knowledge, information and supporting each other.

The convention always brings together some of the leading medical professionals in ITP but, I think just as importantly it also provides a platform for us ITP patients to talk to each other, swap our experiences and encourage each other. No man is an island and all that !

It is wonderful to know that in 2023 we will be able to get back to a more conventional Convention but we also appreciate that some of our members and followers prefer a non face to face way of keeping in touch. For that reason we are continuing our programme of online local support groups via Zoom and it is also why we are available on the many social media platforms.

Of course we also have our quarterly magazine The Platelet as another way of communicating between us ITP folk.

Our aim at the ITP Support Association is to be available wherever people want to connect with us. As ever it is different things for different people and we try to cover as many bases as we can.

We can be found on the following social media platforms -

LinkedIn, TWITTER, Facebook, Instagram, You Tube, which can all be accessed via the main ITP Support Association website -

https://www.itpsupport.org.uk/index.php/en/

Our local support groups online are listed at the following link -

https://www.itpsupport.org.uk/index.php/en/itp-local-group-meetings

Tickets for the 2023 Annual Convention are available via the following link -

https://www.eventbrite.co.uk/e/itp-support-association-annual-patient-convention-2023-tickets-438996338867

Wherever and whenever you wish to connect with us, we hopefully have a platform for everyone.

29th October 2022