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Cassie’s Story (Ehlers-Danlos Syndrome)

Cassie's Story (EDS) I was 27 years old when I finally was able to connect the dots with my diagnosis of Ehlers Danlos Syndrome (EDS). EDS is a mutation in the gene for connective tissue, and can affect the body in numerous ways. Although there are six types, the three are most common are: Classical, Hypermobile, and Vascular. It is possible for individuals to have symptoms cross over from the different types but not be diagnosed with it. EDS is inherited from at least one parent (in my case my mom), and every child I may have will have a 50% chance of inheriting the same type, though their symptoms may all be different.

My entire life I have had strange pains, unexplained symptoms, and a body that doesn’t tend to behave “normally.” I always thought that being hypermobile was normal, as family members have also displayed similar traits, but only when it started to become a major problem did I decide to find out what exactly it was that made my joints do this. Several months of reading and discussing my abilities with my chiropractor led me to a geneticist and a positive diagnosis. I have learned that a lot of my body’s odd symptoms and sensations can be apart of my EDS, including IBS, daily pain, PCOS, instability, migraines, temperature intolerance, and much more.

Almost every joint hyperextends, some joints sublux, and some joints I have actually moved completely out of place and back in. Things as simple as pressing a button on the radio can make my fingers bend backwards. Now that I am aware of my hypermobility, I have to concentrate every day on proper posture and range of motion with every activity. In March 2013, a few weeks after my diagnosis, I saw an occupational therapist who helped my get 12 silver rings splints through my insurance. I will need to get more as not all of my finger joints have protection, but I will need to wait until insurance will cover more. I also completed six weeks of physical therapy where I learned better ways to support myself when walking and performing the limited exercise I am able to. My podiatrist had orthotics made to support my flat feet and attempt to reduce the pain from the sinus tarsi syndrome, and I will need to wear ankle braces if I do any major activity. I also have wrist supports that I wear to keep my carpal bones supported. I am unable stay in one position sitting or standing too long, and my activities are becoming more limited as my symptoms get worse. Even walking one mile can leave me in pain for several days.

I’ve always tried to minimize the pain I have been in, but it is starting to become unbearable. It is becoming difficult for me to obtain restful sleep without a sleep aide, and sometimes I can’t walk or use the stairs. My next step will be seeing a rheumatologist to assist with pain management and hopefully confirm if I have fibromyalgia. I have also started a gluten free lifestyle to help decrease some symptoms. I also have high absorption of vitamins, minerals, and medication as do many of those with EDS. Even when taking supplements, I test low on many markers. Medications aren’t always as effective and I need higher doses.

I have been educating all of my friends and family, and even strangers who notice my rings. It’s not always easy to be so young and not be able to do everything that my friend’s can do. I can only walk a fraction of the time and distance that others can, I can’t play sports or be as active as I used to be, and I have to make exceptions for myself in many situations. Some days are better than others, but each day is different. One way we explain how we “feel” to others is the spoon theory ( best explained here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/).

One of the hardest aspects of EDS is that many doctors are uneducated on the subject and aren’t sure how to treat EDS patients. I’ve had to teach my primary care doctors, who can barely pronounce the full term, the many aspects of EDS. This can make finding appropriate care difficult. Education is important so that more people and doctors become aware of EDS and can diagnose patients at a younger age (even at 27 I am considered a young diagnosis) and obtain proper care. I fight so that one day others won’t have to.

Cassie
Missouri
Submitted 07/21/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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6 comments

  1. I am greatful to hear others stories. I was diagnosed early at 18..it’s just such an ordeal and hassle..b/c everyone thinks u look so normal..how can u have something like this? I have been trying to reach put and educate dolks about it a while. I also have accompanying muscular dystrophy. You may be able,to google my name and see some articles about how I got it across to people, raised money for research etc. I fight with this,every day and now my old Dr that was THE BEST for this, understood, diagnosed and took great care of me actually tried hitting on me! So yeah now my new Dr doesnt know much about it and Ive just kind of been suffering due to that. Also, Ive been filing for disability since I was 19 (now 29) and TN wont approve it for some crazy reason…so we have to take it to federal court. Crazy life! E-mail me anytime, Id love to talk to someone going thru this as well, share advice, experience and strength. Keep on fighting! Thanks!

  2. So happy to hear other stories of EDS. I have EDS hypermobile as well. I was diagnosed when I was 18, right about the same time I was diagnosed with Chiair. Most of my joints hyper extend, my knees have dislocated ever since I was really young and now my hips and most of my fingers do as well. I have had 2 babies, my son when I was 20 and my daughter when I was 21, due to the EDS my water ruptured early with my son at 33.5 weeks, he was a preemie. During both pregnancies my left hip would pop out on a regular basis as well. Now at 21 we just finished applying for disability, hoping and praying i’m able to get it as we don’t have the best healh insurance right now and the better insurance would be a blessing. Needing to get a set of silver ring splints but right now with my insurance we still can’t afford it. I am majorly blessed with a primary care dr who knows about EDS, and is very supportive. She’s currently getting my insurance to approve a power wheel chair for when we will be out at parks, zoo, mall, etc as I can’t walk far without my hip dislocating and I can’t use forearm crutches for any big length of time as it puts too much pressure on my wrists making them sublux.

    I hope and pray for the best for you! If you’d like please feel free to add me on facebook, I included it in the “website” field, hopefully it’ll show up.

  3. I have known about my EDS since before I was born, my mother has is, and my sister also has is(older) so we knew I would, and I do. I haven’t ever met anyone outside of my family who has this… So I just googled stories. I found yours and it was veryyyyy similar to mine. I also have many odd body behaviors like you, I have PCOS, constant migraines and nausea and stomach issues. This doesn’t make me feel crazy anymore. People don’t understand the severity of my syndrome. I explain and they still don’t understand how an 18 year old girl can hurt so bad, or be so fragile. It’s tough when something that is extremely easy for someone else to do that makes you be in excruciating pain for days! I’m so glad I came upon this sight.

  4. Hang in there. I was diagnosed at 50. Had problems all my life but really no joint pains. All the other stuff.GI, migraines, dental … One day I was gardening and the next day in excruciating pain and couldn’t walk. Now I have bilateral braces for my ankles and knees and can’t ealk more than 10-15 min without a lot of pain. I want to suggest that you tske magnesium and Vitamin D supplements. They have helped me a lot. Even if our Vit D levels come back normal, we are still low and need to supplement. Also it has been noted that we don’t have fibro, we havepain from the fascia over the muscle that connects the tendons and ligaments. I am sorry I can’t remember what the disgnosis is called at this time. I hope everyone knows about the facebook page for the Ehler-Danlos Foundation. Mark is a wonderful resource. Also, connective tissue disorders are elegible for disability and there is a resource on the website for help. Sorry I am getting tired and can’t remember what else I wantrd to say. Good luck ladies and use your spoos wisely!

  5. I realize you wrote this some time ago, but sometimes I stop by this site to remember I’m not alone. Maybe I should blog. Thank you for sharing, sometimes we all need to remember we aren’t crazy – these things are real. I have been diagnosed with “Benign Joint Hypermobility Syndrome”. It took me three years, so many doctors I lost count and several recommendations to see a phsychologist to finally get a doctor that even knew what this was. Through much research, I’ve realized there is great debate amongst the experts as to whether or not EDS Hypermobility and BJHS are even different disorders. I too suffer from fibromyalgia and PCOS, in addition to Raynaud’s. They’re calling them symptoms. I guess it’s not so “benign” after all is it? I’ve just passed my 9 year anniversary of Military service! We can do anything! Keep your chin up and an extra spoon in your pocket for emergencies!

  6. Hi! I also have Hypermobile EDS. I’m 13 and am trying to create a teen/youth support group for those with Ehlers Danlos, because there really aren’t many for teens. I was wondering whether I could use your story on my site.

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