#My moms diagnosed with it and I have a ton of symptoms of hypermobile Eds (certain joints being very flexible

[theforesteldritch]

Oh I got really good news I guess, I’ve finally got off the wait list for the pediatric Ehlers Danlos clinic, I was worried for a while that I was going to turn 18 before I got in and so have to be put back on the end of the adult wait list but I have an appointment in a few weeks and I have to go to Toronto for it lol

[uniquelysamantha]

What The Hell Is EDS?

Why You Should Care...

You can’t know me without knowing my journey with EDS. My journey helped me become the woman I am today. The woman I was at 8 and the child I was yesterday.

So What Is It?

EDS stands for Ehlers-Danlos Syndrome. It’s a collection of connective tissue disorders. EDSers are born with faulty collagen. (And no, collagen supplements can’t change faulty collagen to healthy collagen.) Unfortunately collagen is needed to hold the body together. There are several types of EDS, some being moderately common and some extremely rare. Each type has certain symptoms that are different from other types, but a few symptoms are present across the spectrum. I could write a paper about EDS, a long paper. Instead, I’m going to tell you about my experiences.

First, let me get one thing out of the way right at the beginning. I have two types of EDS, which is supposed to be impossible, but bear with me. I inherited Classical EDS from my mom. It was obvious from the beginning. I also inherited Hypermobile EDS from my dad. That was only diagnosed later. Here’s the absolute crazy thing. Neither of my parents knew they had EDS. My parents, like so many other EDSers, had symptoms, but doctors couldn’t figure it out. So, yeah, it’s crazy that two people with different types of EDS meet, and pass on that faulty gene to all three children in the family. So, before other EDSers say anything about how it’s not possible to have two types, my two types EDS have been confirmed by four different geneticists.

Ok now that that’s out of way . . .

When I was born, my left foot was twisted completely backwards. According to my parents, my health and development issues never got “better.” My mom had been around babies all of her life. She knew what babies were supposed to be able to do around certain ages. From the very beginning, she tried to tell the doctors that something was wrong with me. I couldn’t hold my head up when most babies do. I couldn’t sit up when most babies do. Forget crawling and walking on time. All through this, my parents struggled with my severely fragile skin. It was bruised most of the time and would tear at the smallest bump. There was clearly something wrong with my health, but the doctors didn’t understand what.

At the age of 18 months I was still not walking well. That left foot was floppy and didn’t want to stay in place. I was shipped off to an orthopedic surgeon to see what could be done. This was the most important doctor in my life. He was the first one to suggest to my parents that I might have Ehlers-Danlos Syndrome. He didn’t want to make the official diagnosis because he didn’t think he had the qualifications to do so. So he shipped me off to the Shriner’s Hospital for Children. It was a very high ranking doctor that finally told my parents that I have Classical EDS, then called Type I.

Unfortunately, even the doctors didn’t know much about it and had never heard of someone being diagnosed so young. We left the Shriner’s Hospital For Children with more questions than answers. This was in 1973.

Cigarette Paper Skin . . .

As a child, my paper thin skin caused a ton of problems. Any fall would warrant a trip to the ER for stitches. Unfortunately because the doctors in the ER didn’t know anything about Ehlers-Danlos, they spent hours stitching me up, only to have them later pull through my skin, causing extremely slow healing and giant scars. I have tons of scars, from my head to my toes. Some are bright purple and some have stretched so much that they spread across my whole leg.

Rubber Man Joints ?

When I was about eight my joints started to painfully sublux and dislocate for no reason. The doctors didn’t understand how I could dislocate my knee during my sleep. My ankles were so weak that stepping on a pebble could cause a sprain or subluxation. I was on crutches 18 times before I even reached the age of 18.

My feet were just as unstable. They were terribly weak and I needed special shoes from the very beginning. Actually all of my joints were unstable. I could barely hold a pencil or a heavy book. My elbows and shoulders hurt when I tried to pick myself up off of the floor. I only became aware that most people’s knees didn’t hurt every day when I was about 10.

Ugh Surgeries . . .

To date, I’ve had 40 (I’m currently 51.) Some surgeries have been routine, like my tonsils and appendix. Most of my surgeries have been orthopedic and even experimental for a young EDSer. My feet have been cut up so much that I have more metal than bone in some areas. And, most of these surgeries failed within in years if not months. I’ve also had several reconstructive surgeries to try to put things back where they go.

I had a bilateral knee reconstruction from a terrible fall I had. I still have nightmares about it. More recently, I’ve had three surgeries on my left knee to reconnect my quad tendon to the bone. Again a terrible fall. Because of that stupid quad tendon, my knee can’t hold me upright any longer.

Wait, There’s More . . .

EDS is not just skin and joints though. Slow healing is a big part of every type. When a doctor says he’ll take the stitches out in seven days, it ends up being 14. I get sick if I’m around anyone who sneezes or coughs. I’ve had Scarlet Fever, several bouts of pneumonia, fevers over 103, bronchitis twice a year like clockwork, and enough viruses for hundreds of people.

Then I have other related issues. My heart and lungs are weak. I had to have a hysterectomy when I was only 24. I can’t even look at spicy food without my GERD yelling at me. I have mild hearing loss because there are bones in the ear, which can sublux too. My eyes are tricky because they change prescription a few times a year.

Displaced . . .

At the ripe old age of 43, I moved into the local nursing home because I just couldn’t take care of myself. Some days I’m fine, but other days I can’t move my neck without shooting pain. It’s very hard to eat or sit up when your neck is subluxed. Forget trying to cook for myself. I now use a wheelchair full time. I actually don’t mind because walking was not only painful, but dangerous. I had the chance of falling with every step, every tiny step. Yes, I’m limited a bit to go places because of my chair, but heck, I couldn’t do stairs when I walked anyway.

Evolution . . .

As my Ehlers-Danlos has progressed, I’ve had to give up a lot of things that I love. I can’t sew or knit anymore. I really shouldn’t be around most animals anymore because of their unpredictability. I can’t even hold a fork and spoon correctly. I haven’t cut my own food in years. I can’t chew gum or eat apples without cutting them up because my jaw dislocates. I can’t hold books to read. Thank goodness for ebooks! My back and knees are painful every minute, of every day, of every week, of every month, of every year.

So, Anyway . . .

Even with all of my physical issues, I’m actually content most of the time. I know my limits and stay within them while creatively adapting activities to have a great quality of life. I write, read on my tablet, research curious little things, even learned a way to knot keychains and small wall hangings. I still love people, and I still create, and I still learn. Those things are important to me.

Uniquely Samantha . . .

My life journey is mine. It’s made me as unique as your journey made you

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 3 Prompt: Symptoms)

Unbeknownst to most people in the community and even many in the medical community as most medical personnel never learned about EDS in school or if they have were only taught the very most basic information about it but Ehlers Danlos Syndrome is a systemic condition and predisposes those with it to over 250 other conditions so it's not unusual for someone with EDS to have 20, 30 or even more other conditions caused by it which are called comorbid conditions or comorbidities.

EDS is a genetic condition that affects the structure of connective tissue. There are multiple types of connective tissue but there are also multiple types of EDS so one or more types of connective tissue can be impacted. Connective tissue also makes up at least part of every part of the body so when your connective tissue is faulty and prone to damage that also means so is everywhere connective tissue is located including but not limited to the skin, cartilage, the brain, heart, lungs, GI system, liver, kidneys, bladder, Mesentery system which is the stringy organ that is around your abdominal organs that eases then and holds them in place, lymph nodes, lymph ducts, nerves, blood vessels, blood cells, nerves, bones, bone marrow, joints, tendons, ligaments, muscle sheathing, eyes, ears, nails, hair follicles, spinal cord, sweat glands, respiratory system etc. You name it, it contains connective tissue so anything can go wrong with any part of the body leaving many patients diagnosed with conditions such as conversion disorder, meaning that all of your symptoms are in your head and you're fine for years and more often, decades because we usually get diagnosed with a lot of these comorbidities before we finally find that one doctor who can put the pieces together and say, this isn't in your head, you have Ehlers Danlos Syndrome and those other conditions are very real because EDS is what caused all of them.

Now that we have discussed comorbidities I have dealt with countless symptoms over my life. As a kid it started with chronic pain, migraine headaches, and issues resulting from a compromised immune system because I caught everything going around and usually more than once. I don't remember a holiday as a kid where I wasn't sick or hurt. I was extremely clumsy, unable to run correctly until high-school with the very extensive help of my gym teacher. I was always falling, rolling my ankle, and just in general looking awkward with my body movements. I had multiple gym teachers who would agree that there was something physically wrong with me long before I could get any doctors to listen to my mom or as an adult, myself. I had to take special reading and writing classes because even to this day I cannot hold a pencil well or write with control because my fingers are too hypermobile to control a pencil so my writing is often illegible. I had a very severe failure to thrive, also called juvenile dwarfism, not even growing an inch between the ages of 2 and 12. My parents were told when I was 2 years old that I would be 6’4’’because I was so tall as at one and two years old that people would criticize my mom for carrying me out in public thinking I was 4 or 5 years old when I was only a year or two years old. I was 3’2” from the age of 2 to the age of 12 and of course when I was 12 I was extremely short and was bullied for my size as well as my weight which increased due to inflammation from undiagnosed celiac disease. There were multiple incidences with medical personnel and social workers as a kid because I always had such severe bruising all over my body and they believed I was abused. I didn't lose my teeth, losing only one on my own and at the age of 8 my dentist began pulling out my teeth which left me with dental crowding and requiring braces which were removed prematurely. I dealt with Learning disabilities and have been in glasses since age 4. I would pass out all the time as a kid, starting at 8 years old.

Bullying was a huge issue for me as a kid because I was socially awkward showing signs of OCD as well as being more mature than my peers due to my medical experiences and history with my siblings that forced me to grow up more quickly. That combined with issues such as my clumsiness and height made me the perfect target for bullying. I got what I believe was my first Traumatic Brain Injury when I was 9 years old while hanging upside down on the monkey bars. My bully had another student who had Down Syndrome, climb to the top of the monkey bars and lift my legs so I fell off onto my head.

My second was in the 6th grade. The same bully would bully other kids to help her bully a bigger target of hers which was me. One day I was at my locker between classes. Our lockers were assigned in alphabetical order by last name, of course my bully's last name came right before mine so her locker was directly to the left of mine. My mom tried to get it changed but the school refused. She shoved me down between classes while I was exchanging my books and the two kids with the locker to the right of mine she had help her roll me onto my stomach on the ground, one sat on my butt and held my feet down, the other sat on my back and held my arms down under her feet. my bully yanked my head up so my forehead was on the floor of my locker and I was trying to get out so she had the girl on my back use one of her hands to hold my head down. My bully then kicked my locker door shut on my head over and over again and I went unconscious. There were two teachers in the hall at the time but they just waked into the classroom when it started. I woke up and the hall was empty. I went to the office and told them I needed them to call my mom, I needed to go home and explained what happened. They called my mom and instead of telling her the truth they told her she needed to pick me up because I was acting strange. She came and got me and found out what happened getting me treatment.

She then took me to the school a few days later since the doctor didn't want me to return for so long (I apologize I don't remember a lot from the two weeks following this so I'm going off what I was told so the exact time I was out of school, I believe was around two weeks but I'm not sure. Anyhow at the school, we met with the principal and office staff who denied any teachers were in the hall or that any of this happened. My mom demanded to see the recordings on the cameras as a hall came in at a T right behind my locker so that camera faced my locker as well as one at each end of the hall my locker was in. They tried to tell her all three cameras were broken. My mom wasn't buying it so they tried then saying the recordings were gone. they went round and round and the school flat out refused to show her the video. My mom demanded that the girl who did this be punished because she has been asking for the school to help me since I was in the first grade and this girl started bullying me but they always fail to do anything.

They tried to then give me an in school suspension which my mom refused to let them do. They still went behind her back when I returned and made me take peanut butter sandwiches to the kids in detention during my lunch as punishment because they were mad my mom came in to question the incident. They refused to punish my bully in any way and when my mom demanded to know why, they said her mom and grandmother graduated from the school so she has a lot of history with the school which years later we found out after me and 9 other kids that I know of and who knows how many others, ended up being pulled out of the same school because of her bullying that having history at the school actually turned out to mean, she was black and they would not punish her because of her color. At the end of the school year my mom pulled me out of the school not sure what to do since back then they didn't have any kind of free online schooling so pretty much everything costed money which is when my grandma stepped up and told my mom she would help because there was no way I would be going back to deal with more bullying.

I had a ton of intestinal issues having to start colonics at around 10 years old and get my first colonoscopy around the same time. As a teen I really went down hill, struggling to eat because I had very severe nausea and cramping pain upon eating which made many of my friends believe I was anorexic but I went years without being diagnosed with gastroparesis. I started having thyroid issues and finally diagnosed with food allergies at age 14, Chest pain, palpitations, arrhythmias and trouble breathing around age 15 and seizures and cardiac arrest events at age 17.

At age 19, right before starting college I lost the ability to walk with no reason why and was sent to physical therapy to learn to walk again. The hospital visits continued in college from the seizures, emergencies from my thyroid levels going sky high or bottoming out, I started having issues with low sugar, rectal bleeding and more GI and Muscular Skeletal issues that again came to the attention of a physical education professor I had in college. The cardiac arrests continued to happen and I got an emergency pacemaker put in at age 23. Also lost the ability to walk a second time and re learned during this time.

After graduating and starting working I really went down hill. My nerve pain got so bad I could hardly tolerate it and had a lot of issues with muscle spasticity. Passing out and dizzy spells got worse, seizure meds aren't working muscle weakness got again worse in my legs and I started literally wondering if I was dying, I had such severe fatigue that I slept every moment I wasn't working, bleed very badly during my period or with just mild trauma worrying my dentist so badly that he sent a letter to my doctor suggesting a possible bleeding disorder. I was going into shakes from low sugar and low sodium frequently but at the time had no idea why I would start shaking multiple times a day. Myoclonic epilepsy started and has progressively gotten worse, Dystonia started up, I started getting intestinal obstructions more often and more gastroparesis symptoms with the nausea and vomiting, sometimes cyclic vomiting. I developed a limp and went onto forearm crutches which eventually progressed to paralysis.

I have always had issues with dislocations of joints and spinal manifestations like scoliosis, Craniocervical and Atlantoaxial instability. I’m prone to non cancerous masses that could be cancerous one day including masses in my breasts, heals and between the vertebrates in my spine. My memory has deteriorated and I now have issues which I call temporary blindness when I turn my head a certain way which pinches my already compressed brainstem kinking it off so my vision is interrupted. With Systemic Mastocitosis I deal with allergic reaction type symptoms such as anaphylaxis, overproduction of mucus, coughing, hives, swelling, rashes, itching, hot flashes, flushing and more. I overheat and have hyperhidrosis. I have muscle spasms from the paralysis, dry mouth from the meds, in addition to the heart arrhythmias and trouble controlling my body temperature from the damage to my autonomic nervous system failure I have swelling of my abdomen, extreme thirst, bladder retention, abdominal cramping and more.

There are endless symptoms associated with EDS and it’s comorbidities which has a huge impact on your social life. You can't do the things you used to do and may come up with new hobbies and later deal with the grief associated with losing the ability to do those hobbies, in turn having to find new hobbies. You lose all or almost all of your friends because they don't like what you have become, the things you used to be able to do with them and no longer can, they don't understand if you need to cancel plans, when you lose the ability to drive they drop you cold because they don't want to pick you up many of us deal with the realization of how badly we wanted friends growing up due to our social awkwardness that resulted from our illness, time spent in the hospital, maturing more quickly, as well as the result of decades of medical abuse and neglect which in most of us has resulted in complex PTSD.

Almost all EDS patients are either on the Autism Spectrum, diagnosed with Obsessive Compulsive Disorder which some associate with social awkwardness and also the intense need for us to please people meaning many EDS patients were known as extremely hard and dedicated workers when working or in school as well as very dedicated to friends and families. We basically give our friends the clothes off of our backs meaning that most of us unknowingly befriend people who use us and are in take take take relationships where we give everything we have into a friendship or relationship while the other person gives little back resulting in most of us losing all or almost every friend we had when we get sick and no longer have anything to give. When we are no longer able to do for others those people quickly jump ship leaving us with no friends. Most of us have this very similar personality type due to our history of growing up quickly along with the shared comorbidity of Autism, OCD, and Complex PTSD.

There are countless symptoms associated with EDS and they are different for each individual. Even in my case alone these are only the tip of the iceberg when it comes to symptoms I have experienced alone so EDS isn't an easy condition to live with physically or emotionally and the diagnosis can be quite the pill to swallow with little understanding from friends, sometimes family or even the medical community.