Sunday, January 19, 2020
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Dani’s Story (EDS – Ehlers-Danlos Syndrome)

Greetings fellow FLAGC Members! My name is Dani and I am honored to be the official writer for all things EDS.

In case you’re wondering what EDS stands for…it is Ehlers-Danlos Syndrome. EDS is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). The collagen in connective tissue helps tissues to resist deformation (decreases its elasticity). In the skin, muscles, ligaments, blood vessels, and visceral organs collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results.

Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure, and treatment is merely supportive at best, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Corrective surgery may help with some of the problems that may develop in certain types of EDS, although the condition means that extra caution is advised and special practices observed.

I’m 36 years old, trapped in the body of a 90-year-old with the mentality of a 19-year-old so I am guessing the average for me is… 24 years old so if I tell people that its not really a lie right? LOL! I am married to the greatest man in the world, and the proud mother of eight rescued furry four-legged kids (some people call them dogs!). I totally believe in the healing powers of animals. They have rescued me in so many ways that I often tell people I am their rescue mutt.

I suffer from EDS. I am both hypermobility type and Vascular type. Can I get a “WOO HOO!” for winning the dysfunctional genetic lottery, lol?  It is a horrible disease; the hypermobility type caused me a great deal of pain. I suffer from numerous subluxations and dislocations. Every joint is prone to it.

I have intense pain, swelling, skin discoloration etc…I am hypersensitive to barometric pressure changes and can predict weather better then any meteorologist I have ever seen on TV. (hmmmm… possible career path, lol?) The vascular type is worse because that is the potentially fatal type. I have suffered some complications from the vascular type already. I’ve had three small strokes, a brain aneurysm and two AVM’s (arterial venous malformations).

I went through a grueling period in my life during this time and when I came out of the brain surgery alive, I came out… renewed. I now get that life is too short to put up with toxic people and toxic situations. Negativity spreads like wildfire and it can really affect your health. One of my favorite quotes is, “When you’re up, your friends know who you are. When you’re down, you know who your friends are.” This cannot be any more true than when you are sick with a debilitating disease. With that being said I look forward to taking a journey with you, whether or not you have EDS, so we can learn together, laugh together and learn how to live a fulfilling life together.

I will look to end each entry with a question in hopes of learning more about you all and sharing some great tips and secrets! My question for this entry is this:

“What do you enjoy doing most in your down time and has that activity/hobby been altered since you became sick?”

Peace and Paw prints!!

~Dani

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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24 comments

  1. Thanks for the article.
    You are a great writer and I look forward to reading your work in future posts.
    The fact that you bring to the forefront such a rare disease is quite comendable.

    Continue being the WARRIOR CHICK that you are.

  2. DANI GIRL!

    Thanks so much for this and you are of course great with words. I commend you for making it through all of this CRAP life has given you. What an amazing thing to over come all of this stuff and still be such an amazing person and friend.

    I too have EDS and the vascular type to boot (as you know)! I have had one of my ovaries rupture twice in my life and I have an iliac artery disection that you have tried to convince me to get looked at again. hee hee oh gotta love my stubborness!

    EDS has stopped my from doing the things I want. I can’t play sports, never have been able to. I use to work out and had to stop because I tore my calf muscle and surprise surprise, it is not healing correctly. I have many gastrointestinal problems that we have not conqured as of yet.

    I have tons more issues but I am so not giving up in this fight! I am gonna fight right next to ya girl!

    Thanks for all you do.

    MUAH!
    Selena : )

    • OMG! You have been thru sooo much! I will kick your lil booty if you don’t get looked at again for the disection and I am proud to be standing next to such a strong and amazing girl while we fight this nasty battle!
      Love ya!

  3. Wow dani you’re amazing! I wish I had your strength.

    I have hypermobile EDS, awaiting tests for classical. It completely changed my life, I started having symptoms at the age of 17 but didn’t get a diagnosis until the week before my 21st birthday, what a present! At the time I was at university & had originally been studying to be police officer but I had to change my course so I decided to do chemistry. I eventually had to leave uni though as my hands were getting worse & started ‘spasming’ that to a near miss with my class mates & some sulphuric acid! Luckily I’ve landed on my feet & have a great job which works around my EDS, but it has affected my. hobbies & what I do in my spare time.

    I used to be a county hockey player, coach & manager for local teams. I used to organise games & tournaments & play or coach every day. I haven’t been able to play for two years now & I tried to coach but I wanted to play so badly it was like teasing! So now I just stay away, I occasionally watch my brother play but even that is hard.

    In my free time I like to watch films, A LOT of films! I like to go on nights out with my friends & they’re amazing, they never make me feel awkward but sometimes I feel a bit boring because I can’t dance until 5am like I used to!

    So my life has changed a lot these past 6 years, but I still enjoy it!

    Holly, 23, Plymouth

    • WOW Holly! What a great attitude you have! You seem to know your limitations but still continue to live life to the fulest! Its great that you have supportive friends and I am sure they are super proud of you for not being defeated by EDS! Stay strong and keep fighting! You’re not alone! We all have your back!

  4. My favorite downtime hobbies were hiking, and wildlife photography before classical EDS kept me from doing those things, now I enjoy spending time on the front deck for short bouts, or wildlife watching through the windows. I moved to the mountains, so I am surrounded by 7 acres of mountainous property with abundant wildlife, so I am lucky enough to still get to watch wildlife, even if I can’t get out and track it down!

    • Your so geographically lucky Ellen!! I am glad that you are still able to enjoy those things, even if its from behind glass! Maybe you can still take pix from your windows or deck? You are a positive person and a valuable member of the EDS community! Thanks for sharing and stay positive!

  5. Thank you Dani
    That funny you ask this. I recently realized it’s not what I can’t do specifically. Although I’ll get to that but it’s the dream that are taken. Every I loose the ability to fulfill one dream I search for a new one. Then that get taken and so on. That’s what I relized was the killer. I also have a hypermobile/ vascular hybrid as I call it. I suffered 3 major stroke Nov 08 and am also 36. I started as a dancer even went to the local arts high school for dance at first. This was killing me the additional narcolepcy made even graduation high school impossible. Got GED. Went to collage. Wanted to go into medical research even before I knew I would as a hobby with little choice very soon to follow. I finally majored in. Sculpture. Working in steel was my real passion. I love to weld even the smell of my welding gloves made my giddy. I am very mechanically inclined. So wood working, engine repair, inventing problem solving. I could all express and found great joy. Well steel is heavy. And there came a point when that had to stop. My stubbornness wasn’t stronger than the EDS. I was I great physical shape ( strong ) I think that helped me a lot. I went smaller then to jewelry, ceramics, etc each one finding a point that I could keep up because of the physical pain and other issues. Had to stop working with children. Was to hard and exhasting. Then one day it dawned on me that paper was light so I have been working on creating new forms or paper art when I can now. I had to stop working about 4 years ago. So now most of my time that I can stay awake is at doctors calling doctors or reaserching to help doctors. Lol. I an very close to UT Southwestern hospital and med school and just found out I can gain full access to there medical library. One of the best there is. They are one of the nations top research facilities. So now my biggest dream is to find ways to help us all. Be used in or give lectures in there med school. Some one once said to me it’s gonna take one or all of US to help beat this battle. Well doing my part in that is my biggest wish and dream now. And still create a little art on the side :-). I have several other genetic conditions that make me so rare I have to teach. Just the EDS and a genetic codition in my arm statistically effect less than 1 in a Billion. So in the end my heart , my love, my nurturing nature can’t be taken away unless I let it. So while most of what i thought my life was and my dreams were are gone or drastically changed. I hold my laughter and my smile safe.

    • WOW! Anna, your story is definitely one of strength and showmanship of resiliance! Most people would just give up but you keep readjusting and moving forward and that is so commendable! We all need to remember that while we may face more and more physical limits as time goes on, we are not limited in our mind, heart and spirit! Thank you for sharing and keep up the good fight!

  6. This is great! I am all for raising awareness of this condition, until my 3 year old daughter was diagnosed with a cross over of types 1,2,3 and 7, I’d never heard of EDS or Hypermobility, since her diagnosis, myself and my 10 year old son have been diagnosed with HMS. Olivia has Bi-lateral CDH, has had more hip surgery than you can shake a stick at, and despite being told she’d never walk and would need a wheelchair for the rest of her life, she went from being in a standing frame at 28 months to walking with a frame, then without a frame at 33 months! She has such strength and determination, she suffers daily dislocations, all her joints are affected, her gastric system and bowel is affected, so are her eyes, she is facing more surgery for both eyes and both hips in the near future. But through it all, she smiles! I read your story with hope that Olivia will stay the way she is with the positive mental attitude, whatever this disease throws at her, just like you have! Thank you so much for writing this and sharing your experiances!

    • What a joy and inspiration lil Miss Olivia is! You should pat yourself on the back for her strength and determination as well because it is so important for parents to support their kids rather then crumble under a doctors diagnosis. The body is a miraculous thing that NO ONE can predict the effects that a disease will have on it. The mind, heart and spirit have healing qualities all their own. I am so proud of her and you and I am sure that with all the obstacles that are on her path, she will only see them as personal challenges and transform them into accomplishments of unbeatable odds! Thank you for sharing!

  7. Dear Dani,
    Thank you so much for sharing your story. I am 48 and I have hypermobile EDS, along with fibromyalgia and a central nervous syndrome (unofficially Tourrettes Syndrome), along with svt, mvp, and skipped heartbeats. I was not diagnosed with EDS until I was 29 – almost 10 years after my son was born – 5 weeks early – and he almost died from having only one developed lung (the other one didn’t even show up on the xray) and he had to have a blood transfusion. He was diagnosed as having EDS shortly after I was. He also has high functioning Autism, and we both have ADD. When I was born, my feet were facing each other – I had casts on my feet with a bar in the middle and constant leg problems – nothing from the doctors. I fell down and dislocated things on a regular basis – I was told that I was losse jointed and a klutz. Later I was asked if my parents were abusing me due to all the bruising. Any surgery I had made things worse. Recovery was long and complicated. When I went to a neurologist, I was told to stop taking tests because I was just crazy. 2 weeks later, after having complications from surgery and going to the chief of orthopedics, I was told to go to a genetecist. I was immediately diagnosed with HEDS – I had never heard of it. After research, it seemed like my grandmother may have had it, but my mom didn’t seem to. No one else (that we knew of had it, so I was concidered to have a mutated gene). I just found out that a cousin on my dad’s side and her child have it. My parents have been involved in local support groups since I was diagnosed, – my Dad has been the Secretary and my Mom was the President (I was the Vice President till we switched roles recently) and I am so grateful for their support – it is NOT easy to deal with (obciously), and many people don’t understand my problems and can’t deal with my dislocations, etc.

    As far as hobbies, I have been acting since I was 6 years old (I still am today) and I am also a writer and a comedienne. I am also a karaoke hostess and a pet sitter. I LOVE doing the karaoke, but get extremely exhausted – even with help for the physical part. I used to dance for hours on end – now a 3 minute line dance kills my hips and literally leaves me breathless. I do arts and crafts, but find it hard with my wrists sometimes. No matter what, I always have to do something to keep my body and my brain active (I say that I have part timers disease because words and thoughts disappear from my head on a regular basis and then fly back in at any given time – seconds or hours later). Being active is a life saver for me. Also having friends and family that support me. I have had many bouts of depression and anger, but I know that it was nobody’s fault – I believe that G-d gave me this so I could teach others. If you email me, we can discuss things further, but I have to say that you are a true inspiration and I pray for your survival from your many difficult struggles. Thank you for listening! Gentle hugs!!

    • Teri, my goodness! You have been thru the wringer! I am so sorry for all you have been thru but you seem to be a much stronger person for it! You seem to know what you want and what you need to do and you are absolutely right, you need to keep your mind and body active! I am glad you have a great support system! Even on our worst days we find ourselves asking why me? I try to remind myself that God gave me all this because he knows in the end I can dig down deep and find the strength to deal with it. I believe in “pre-destiny” so I like to think that I CHOSE this path, of being sick, because someone I love who was pre-destined for this path was not up to the challenge. As much as I hate having EDS and RSD and Fibro, I am still grateful for it because it has brought me into contact with the most amazing people, whose strength I can draw on and that is such a gift in and of itself! Stay Strong, you are an inspiration to many! Thanks for sharing!!

  8. LIFE WITH EDS

    FROM THE DAY I WAS BORN I WAS FALLING APART
    FROM MY HEAD TO MY FEET, FROM MY LEGS TO MY HEART.
    FOR TWENTY NINE YEARS ALL DOCTORS HAVE SAID
    THAT THERE WAS NOTHING WRONG – IT WAS ALL IN MY HEAD.
    THEY CALLED ME A KLUTZ, THEY SAID I WAS SLOW –
    WAS I EVER ABUSED? THEY WANTED TO KNOW.
    I FINALLY KNOW WHY I GOT HURT SO MUCH,
    I FINALLY CAN DEAL WITH DISLOCATIONS AND SUCH.
    THEY SAY THERE’S NO CURE CURE FOR PEOPLE LIKE ME,
    I’LL KEEP GETTING WORSE FROM WHAT I CAN SEE.
    THOUGH I WILL NOT DIE LIKE PEOPLE FROM AIDS,
    AT TIMES I JUST HIDE AND CLOSE ALL THE SHADES.
    EDS MAKES ME ANGRY WHEN I’M IN PAIN ALL THE TIME,
    AND SO I SIT DOWN AND PUT WORDS INTO RHYMES.
    BUT I NEVER WILL QUIT AND NEITHER SHOULD YOU,
    CAUSE ONE DAY THERE MIGHT BE A CURE FOR US, TOO.

    Written and published in Loose Connections and on the internet (read around the world) when I was diagnosed in 1991.

    • I love this! Thank you for sharing!!

    • I was just recently diagnosed, as of last week. I have thought I was a hypochondriac my entire life. I am trying to find more people in the USA who have it. I need to talk to some people here, I have found some in Europe, but it looks like the EDNF is moving and I can’t seem to log back in to the message boards and I have so many questions! Visit my blog! I am trying to raise awareness and money because I had to quit my job because of all of this. I am just turned 24. I have gone from tip to shape to barely holding myself together in the last few months. I do some medical sales on the side but I really just need some support to get through the intitial shock of knowing that I will have to live with this the rest of my life…

    • That Poem sums it all up! Just about 43 and found out that I had/have EDS a couple of years after I had to have complete Pelvic Organ reconstruction surgery… at 32 the surgeon told me that I had the insides of a 70 year old woman and ask if anyone ever mentioned that I might have a Collagen disorder. Nobody had…I was going through way too much at the time to put much thought into it. My insides were falling out to the extent that I was a thin layer of skin away from my Intestines coming out of my vagina. After I healed from the surgery, got through my divorce and was in a better place in life, I decided to see if there was anything I could do to “help” my Collagen and body. Maybe some Collagen pills or vitamins. That’s when I found the EDS websites and everything started to make sense… I had so many of the symptoms of EDS and my son was born with BiLateral clubbed feet as well. I took the info to my doctor and told him I wanted to talk about it the possibility of having it and he looked a my paper and just blew it off with, “You don’t have this”. I fired him, got a new doc and he said it was totally possible. Within a couple of weeks I had an appt with Kaiser genetics and from the clinical findings and medical history, they said that I had CEDS. I didn’t know you could have two forms though and they didn’t do any blood testing. I have been wondering for a while if there was crossover between vascular and classical because I have some VEDS symptoms and my son (haven’t had him diagnosed) shows signs of VEDS (translucent skin on chest with prominent veins, Clubbed feet, thin lips and nose) but I was told that if you had Classical that would be the type your child would get if they ended up with EDS. This is the first place I have ever seen that someone could have more than one type. Did those of you with more than one type have any specific testing?

  9. I agree with Dani – you must be an advocate for yourself as a patient. I had been under the care of an obstetrician from Jan 2004 – JAN 2005 as I was prengnant with my youngest. Although this doc did monthly breast exams, he never noted anything. I continued to follow up and when in February of 2006, I noticed something, I brought it to his attention. It was brushed off as “nothing” as I was “too young” and that I “didn’t have a family history and had no risk factors.”

    Although that was so, I still didn’t trust their opinions. I went to doctor after doctor and finally found one who, although she didn’t think I had a malignancy, agreed to order a mammogram. That mammogram turned into a needle biopsy, a MRI guided biopsy and a PT/CT Scan. Within 36 hours of my “rule out/just to be safe” mammogram, I had invasive surgery and was diagnosed with stage IIIa Breast Cancer. Had I followed the advice or agreed with the lack of findings from my prior docs …my outcome would have been very poor.

    • I am soooo glad that you listened to your body and sought medical help elsewhere until the problem was found!! Thank God your outcome was different from what it could have been!
      Thanks for sharing…XOXO

  10. Dani,

    wow and hello! I too have EDS and RSD (and fibro).I’m 35 and have been dealing with the rsd and fibro for some time and I guess the complications from EDS for years( was just diagnosed classic and vascular recently ) You seem to be an amazing woman and I hope i can eventually get back to the life I once lived for my and my daughter’s sake-I have to get her looked at as well this summer by my geneticist as she’s built like me. Good luck to you and stay strong, you’re an inspiration!

    Natalie

  11. Hi!! My name is Danaya. i am 16 years old and i have HEDS! and boy does it suck 🙁 lol. I was diagnosed with HEDS when i was 15, and wow has it been a journey. I first noticed something was wrong when my knee started to dislocate around 10 times a day. Before i even knew i had HEDS, i had reconstructive knee surgery on my left knee call the Faulkerson’s Procedure when i was 14. Even though my knee is now healed and does not subluxate any longer, all of the other joints have been getting increasingly worse. To answer your question, i miss cheerleading the most. i was a cheerleader for 4 years! and because of my HEDS, i had to quit. it was heart breaking, and it still is. its hard giving up something you love. i did get the opportunity to coach this past summer. it was a squad of young girls, so there was no stunting involved, so i was able to at least teach them the cheers without falling apart too often (:

    • I know exactly what you mean! I used to cheer, play softball, volleyball and track. now, due to EDS i can do none of this anymore. bummer. 😛 But, I have just found out that I have this, so I’m still pretty new to my restrictions.

  12. Bryanna nicole higbee

    Dani, u said u have av malformation. I would love to be able to get some advice from u. My mother was diagnosed last year… (finally) but since being diagnosed noone seems to want to help her she is in pain all the time & often forgets who she is. Plz help with advice if possible!!

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