#Systemic scleroderma

[southie187]

The last day of February is Rare Disease Awareness day and the month is also considered to be Rare disease awareness month.

It also happens to be the month that the love of my life was born.

Please, never take yall health for granted and be grateful for every healthy day you have. So many people out here are battling diseases you have never heard of, dealing with the physical and mental exhaustion, pain and often hopelessness that come along with it.

If you have the time, try to educate yourself about some of the rare diseases that affect millions. My wife had Scleroderma, Sjogrens, Raynauds etc. She passed away at the young age of 31, after battling her illness for 16 years. More than half her life was spent in and out of hospitals and Drs offices.

She was a person with dreams, goals, hopes and aspirations. When faced with the reality that many of things she dreamed of or wanted to do may not be attainable due to her declining health she shifted her energy to spreading awareness and being there for others who were fighting their diseases and who felt lonely and hopeless.

My goal is to continue to spread awareness and tell her story. I pray that with more funding and research eventually a cure or treatment will be found.

Peace and Love

[burythecarnival]

well met, majestic tumblrites 🖤 i have been so fucking sick; i am not ignoring anyone! the pain from the arthritis flare, edema flare, inflamed spine & feeling like my tissue & muscles are corroding is making me so tired. my kidneys feel like they were stabbed & i am so fucking nauseous even after max zofran doses.

i need to try to eat, get some groceries & order new arthritis gloves because i have no clue where one of my kitties stashed them 🐈‍⬛

help is not expected but it is immensely appreciated. do not apologize if you cannot help! life is a wretched cock for plenty of people right now 💋

luv, cuddles & cauldron bubbles, the ghost queen 👻

×××××××××××××××××××××××××××××××××××××××××

cashapp: $dryboneslive / venmo: dryboneslive

[disabledsysboxes]

Autoimmune - 3

[ferretly]

So, uh, does anyone here have (systemic) scleroderma? The last post was from a year ago 💀 but I may as well ask.

[dangerdust2]

Increasing evidence shows that SSc is related to various occupational and environmental factors, such as silica exposure .

The risk of SSc in silicosis patients is 28 times higher than that in the general population .

The clinical characteristics of SSc patients with silica exposure are different from those of SSc patients without silica exposure, such as the degree of dermatological disease and of visceral involvement, and the degree and type of autoantibodies 

Key Points

•Concomitant silicosis worsens SSc patients’ prognoses.

•For individuals with occupational exposure, close observation of the symptoms of SSc, early diagnosis, and interruption of exposure may improve the prognosis.

•Gangrene, Scl-70, elevated BNP and cardiac involvement are independent risk factors for overall mortality.

[medicomunicare]

All hands on DECs: lift your skin up 'cause immunity won't TLR8 further X-age-rated IFNrence

Scleroderma or systemic sclerosis (SYS) affects approximately 300,000 people in the U.S., with about one-third developing systemic disease, which can affect major organs such as the lungs, kidneys or heart. Women are four times more likely than men to be diagnosed with the disease, but until now, the underlying reason for this gender disparity had remained elusive. Two new studies led by…

[industrynewsupdates]

A Comprehensive Overview of Systemic Scleroderma Treatment Market Landscape

The global systemic scleroderma treatment market size is expected to reach USD 1.9 billion by 2027, according to a new study by Grand View Research Inc. The market is expected to expand at a CAGR of 4.0% from 2020 to 2027. The market is largely attributable to the strong presence of therapies used off-label that include small molecule therapies including branded, generics, and OTC drugs.

The mix of several indications and drug classes engenders a fragmented space with multiple players. Johnson and Johnson Services, Inc. dominated the market with a share of 23.7% in the year 2019. United Therapeutics Corporation is the second biggest service provider in the space with a significant share in 2019. The other players such as F. Hoffmann-La Roche Ltd., Gilead Sciences Inc., GlaxoSmithKline plc, Novartis AG, and Pfizer Inc. also have a significant share of the global market.

The on-label treatment is in the development phase. Major players with therapies undergoing clinical development are divided into two sorts. There are some developing new compounds, whereas certain other established players are seen repurposing their drugs (currently approved for other indications) for scleroderma use. In September 2019, Boehringer Ingelheim GmbH announced the U.S. FDA approval of Ofev for the treatment of interstitial lung disease in patients with systemic sclerosis.

Supplemental indication approval is one of the most common strategies adopted by pharmaceutical players thriving in the space. There are several pharmaceutical companies adopting strategies that favor the pharmaceutical industry in offsetting high development costs.

Gather more insights about the market drivers, restrains and growth of the Systemic Scleroderma Treatment Market

Systemic Scleroderma Treatment Market Report Highlights

• The immunosuppressors segment held the largest revenue share in 2019, followed by prostacyclin analogues

• The high preference for immunosuppressants owing to the favorable reimbursement scenario associated with this drug class will support its dominant share in this space

• The U.S. held the majority of the revenue share in 2019. Expected label expansions and the expected launch of first-in-class therapies coupled with an evolving reimbursement landscape for orphan drugs are expected to support market growth

• Europe trails with a lower share as compared to the U.S. majorly due to higher use of generics and biosimilars for off-label treatment of scleroderma

Systemic Scleroderma Treatment Market Segmentation

Grand View Research has segmented the global systemic scleroderma treatment market based on drug class and region:

Systemic Scleroderma Treatment Drug Class Outlook (Revenue, USD Million, 2016 - 2027)

• Immunosuppressors

• Phosphodiesterase 5 inhibitors - PHA

• Endothelin Receptor Antagonists

• Prostacyclin Analogues

• Calcium Channel Blockers

• Others

Systemic Scleroderma Treatment Regional Outlook (Revenue, USD Million, 2016 - 2027)

• North America

o U.S.

o Canada

• Europe

o Germany

o U.K.

o France

o Italy

o Spain

• Asia Pacific

o China

o Japan

o India

o Australia

• Latin America

o Brazil

o Argentina

o Mexico

• MEA

o South Africa

o Saudi Arabia

o UAE

Order a free sample PDF of the Systemic Scleroderma Treatment Market Intelligence Study, published by Grand View Research.

[dangerdust]

Silica associated systemic sclerosis: an occupational health hazard

A middle-aged male working in the sandblasting and stone-cutting industry was brought to the medicine department with skin tightness, dysphagia and discolouration of the skin for the last 1 year.

On examination, he had skin thickening over the face and the extremities with restricted mouth opening. His hands were cold and showed peripheral cyanosis. Systemic examination was suggestive of diffuse cutaneous systemic sclerosis, further confirmed by the antinuclear antibody testing.

Further, CT of the chest showed mediastinal lymphadenopathy with eggshell calcification and interstitial fibrosis consistent with silicosis and fibrotic non-specific interstitial pneumonitis. 

[drpaulhaider]

Kalawalla Immune System Restoring Agent - See Studies 

Kalawalla Herb is Amazing for So Many Health Challenges. And for Boosting Up and Calming the Immune System, plus Anti-inflammatory. See References and Watch Video and Find Out Everything. Very Safe and Effective

[southie187]

June is Scleroderma awareness month.

It is a rare auto immune disease that severely impacts the life of many. As of now, there is no cure and many of the complications caused by the disease are life threatening.

Scleroderma significantly affects quality of life both physically and mentally.

Please, educate yourselves about the disease and keep those who wake up everyday and do their best to keep going in your thoughts.

I pray that with more awareness and advancement in medicine and science that one day there will be a cure or a way to manage the disease so that people do not have to suffer so much and live long healthy lives.

(Please, please, please... be grateful if you are healthy! If you can take a deep breath, walk up the stairs, take showers, use the rest room, drive, open your mouth, open your hands... just be thankful for all you can do. So many people out here who simply wish they could do half of this for just one day.)

[burythecarnival]

i woke up so fucking sad. you know the sadness that feels like it is consuming your whole being? after feeding the kitties breaky, i then sat down to read news & saw a notification that my bank account is in the fucking negative. i am so sick of just surviving day-to-day. i have prescriptions to get for me & more importantly, for boba fett my calico angel. then more meds later this week because i have to be sedated for two procedures. i am so exhausted. i keep starting to cry & feel pain deep in my chest. i am going to take my morning meds & hide under my sheets until i feel like i can human a bit better.

if you are a sweet biscuit who enjoys my sexy posts & are comfortable helping, i would be incredibly grateful. i am going to need help this week & am already beating myself up about it. absolutely no pressure, money is tight for many of us. i appreciate your genuine care either way, seriously 🖤🤍

×××××××××××××××××××××××××××××××××××××××××

cashapp: $dryboneslive / venmo: dryboneslive

[cannabiscomrade]

It's Gastroparesis Awareness Month

Hi! I have gastroparesis and I'm an insufferable know-it-all so let's talk about it!

Gastroparesis, or a paralyzed stomach, is a condition that causes delayed gastric emptying.

This can cause a range of symptoms and complications:

nausea

vomiting

early satiety/fullness

upper gastric pain

heartburn

malabsorption

dehydration

malnutrition

Gastroparesis can be treated by a gastroenterologist, but often needs to be managed by a motility specialist due to a lot of misconceptions about the condition. Providers, especially in the emergency department, will commonly misdiagnose gastroparesis as cannabis-hyperemesis syndome, cyclic vomiting syndrome, gastritis, food poisoning, etc.

There are several commonly known causes of gastroparesis like vagus nerve damage from diabetes, injury to the stomach, and stomach surgery like hernia repair or bariatric surgery. There are also idiopathic cases with no known cause. Other causes of gastroparesis are:

Connective tissue disorders like HSD and EDS (commonly hEDS and cEDS)

Post-viral (like COVID, viral gastritis, mononucleosis/Epstein-Barr)

Restrictive eating disorders

Autoimmune diseases like Systemic sclerosis (scleroderma), Lupus, Hashimoto's

Central nervous system disorders

Gastroparesis also has common comorbidities with conditions like:

POTS and other forms of dysautonomia (POTS, EDS, and gastroparesis are a common triad of diagnoses)

MCAS

SMAS (which can also present with similar symptoms to GP)

Intestinal dysmotility and esophageal dysmotility disorders (known as global dysmotility)

PCOS with insulin resistance

Endometriosis

SIBO/SIFO

Chronic intestinal pseudo-obstruction

Migraines

Certain medications like Ozempic and other drugs in that class act on the digestive system to delay gastric emptying, which has caused people to be diagnosed with gastroparesis. Some people report that their cases have not gone away since stopping the medication, others report feeling better after stopping. Other drugs like opiates and narcotics can cause delayed gastric and intestinal motility as well, but these are commonly known side effects of those painkiller classes.

Gastroparesis is classed based on severity and graded based on how you respond to treatment.

Severity of delay ranges from mild to very severe, and this is based on your actual stomach retention calculated at 4 hours into a gastric emptying study.

The grading scale ranges from one to three, one being mild and three being gastric failure.

There is no consistent single treatment that is proven to work for gastroparesis, and there is no cure. Treatments can consist of:

Diet changes (3 Step Gastroparesis Diet, liquid diet, oral sole source nutrition)

Prokinetic (motility stimulating) drugs

Anti-nausea medications

Proton-pump inhibitors

Gastric stimulator/gastric pacemaker

Pyloric botox and dilation

G-POEM/pyloroplasty

Post-pyloric tube feeding

Gastric venting/draining

Parenteral nutrition

IV fluids

Other surgical interventions like gastrectomy or rarely, transplant

Gastroparesis is a terrible disease and I hope that if any of these symptoms resonate with you that you can get checked out. I was misdiagnosed for a long time before getting a proper gastroparesis diagnosis, and all it took was a gastric emptying study. This is ESPECIALLY true if you're having post-COVID gastrointestinal problems that are not improving. I almost died from starvation ketoacidosis because of how serious my GP got in a short period of time post-COVID (I had GP before COVID), and now I'm tube reliant for all my nutrition and hydration.

Stay safe friends!

[ferretly]

Ah … so, the scleroderma has finally begun spreading to my feet. I was worried about this a few weeks ago when they wouldn’t fit in my shoes and I had to let out the laces a ton, but I was too anxious to visibly check.

Damn.

[doomedfromthewombfr]

Hey there. Welcome to my blog- my little corner of the universe. I’m Ember, here to serve up a blend of existential dread, mental illness chronicles, and dark humor that somehow makes sense of the chaos.

If you’re looking for a ‘how-to’ on inner peace or any version of “good vibes only,” you might want to hit that back button. Here, I am all about raw honesty and laughing at life’s absurdities, like navigating a long list of diagnoses, trying to trick my brain into caring, and figuring out if I even exist outside my home. Basically, it’s all the stuff no one really wants to talk about… but probably should.

So grab a snack, settle in, and let’s take this weird journey together. I’m not here to be fixed; just here to feel a little less alone in the mess.

You can ask me anything 🖤

Side blog for my daily life and struggles- a bit more personal: https://www.tumblr.com/obsidianwhipsers/769545712780345344/welcome-to-the-mess-my-name-is-ember-this-is

Chronically ill and permanently disabled

Professionally diagnosed with:

~Borderline Personality Disorder

~CPTSD

~GAD

~Panic disorder

~Agoraphobia

~OCD with Contamination and magical thinking

~Bipolar 2

I also have many chronic physical health conditions/diseases *actually diagnosed*- Fibromyalgia, Sjogrens, Systemic Scleroderma, POTs, inappropriate sinus tachycardia, degenerative disc disease, arthritis, narrow angle glaucoma, migraines, ocular migraines, endometriosis, chronic fatigue syndrome (ME/CFS), adult onset asthma.

*in process of getting diagnosed with or ruling out MS- a lot of brain lesions (T2 Flairs)- could also be Neuro Sjogrens (NSS)