My name is Holly and I started having problems with my hip when I was 17 years old. My GP said that it was “growing pains” and that I was “playing too many sports” and gave me painkillers and sent me on my way. Then I started getting pain in the other hip, then my shoulder, then my hands…now there isn’t a joint in my body that I haven’t felt ache, crack, pop or dislocate.

It took four years and five different doctors to even watch me walk in front of them, I then was referred to a specialist and was told that I was hypermobile. My geneticist has now diagnosed me with – Classical Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia. Ehlers–Danlos syndrome (EDS) (also known as Cutis hyperelastica) is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (Type I or III). The collagen, often referred to as “glue”, in connective tissue helps tissues to resist deformation. Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia.

My life has changed massively since I found out that I have a rare disease. There is no cure, only pain management and physiotherapy to keep me going for as long as I can. I have had to change my entire life style, I had to leave university and have gone from an active sportswoman to being restricted to only swimming and pilates. I hate pilates!

My condition isn’t a death sentence and it can be managed if diagnosed early and treated correctly. I didn’t have that chance but if we all support the Global Genes Project then others in the future may well do. You don’t have to give money if you can’t, just spread the word on rare diseases like mine so that doctors and other medical professionals can become aware of rare conditions.

5 thoughts on “Ehlers-Danlos Syndrome Misdiagnosed In Holly As “Growing Pains” From Playing Too Many Sports”

  1. vanessa says:

    My 3 year old just got diagnosed with EDS type 3. She had been experiencing so much pain in her legs particularly and it was so hard to watch as a parent. There were days she would just sit on the floor and cry as it was too painful to walk. She seems to go through good patches and bad patches. At the moment we are in the best patch we have ever had. We changed her diet dramatically increasing intake of vitamin c and sunflower seeds which help with collagen, started Bowen treatment and swimming. I’m hoping this good patch lasts for a long time for her. Would love to hear if other people with EDS go through good times and really bad times

  2. amy b says:

    I was diagnosed in my early 40’s and yes go through good phases and bad phases. A lot has to do with managing stress and sleep but I think there are just natural fluctuations as well. Glad that at such a young age your daughter know’s what’s up because it makes a big difference and at least she won’t have unnecessary surgeries because the docs don’t know what’s wrong. Speaking from personal experience there are at least 3 of the 12 surgeries that i have had in the last 6 years that I should never have had.

  3. Des says:

    I am diagnosed with growing pains. But I have been diagnosed with it for about 4 years. The doctors don’t see anything wrong with me outwardly so they say I didn’t stretch properly, and just give me painkillers. The pain has been affecting me so much that I’ve been doing some research and I think I might be hypermobile. My fingers are hypermobile and I think I show quite a lot of symptoms. My parents don’t really card anymore as it’s been 4 whole years. How do I get the doctor to further examine and diagnose me with something else other than growing pains? I certainly don’t think it’s growing pains. I’m 14.

  4. Linda herbert says:

    My 15 year old daughter has been diagnosed with eds after having 2 hip displaysia operations that has ended her promising athletics career. To be told at her age she shouldn’t run again has been devasta
    ting for her to hear. Imagine not being able to run with her kids when she has them!!! So apart from swimming I am interested to hear what other sports are ok for eds sufferers to pursue . Welcome feedback

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