Lauren’s Story of Life with Ehlers Danlos Syndrome

Since sharing a post on Myotonic Dystrophy, I wanted to discover more health conditions. Lauren offered to discuss her condition, Ehlers-Danlos Syndrome (EDS).

The NHS describes EDS as “the name of a group of rare inherited conditions that affect connective tissue.” There are several types of the condition where symptoms include:

  • an increased range of joint movement – only known as joint hypermobility
  • stretchy skin
  • fragile skin that breaks or bruises easily

The types of EDS are:

  • EDS-hypermobile
  • Classical EDS
  • Vascular EDS
  • Kyphoscoliotic EDS

The gene is commonly known to be inherited by one or both parents. It is important to seek the right medical advice for you if you suffer from EDS as well the essential support needed in order to adapt to life’s activities. See more information on the NHS website.

I decided to ask Lauren some questions based on her experience of having EDS and the effects it can have on her life.

Which type of Ehlers-Danlos Syndrome do you have?

I have been diagnosed with type 3 – hypermobility.

When was you diagnosed with Ehlers-Danlos?

I was officially diagnosed last July but have been suffering with symptoms of EDS for the past 7 years.

Do you receive any specialist support? (Counselling, occupational therapy etc.)

I have support from rheumatology at Manchester Royal Infirmary where the main specialist actually has EDS herself and also the physiotherapy department who understand my joint and muscle problems. However most doctors are pretty clueless on the illness and even some have never heard of it.

Do you have days where you feel more energetic than others?

Yes some days I can wake up feeling only a little tired and minimal pain but that can change in an instant if one of my joints pop out. If I have a day out I’d have to rest for the rest of the week to make up for it.

Does the condition affect your lifestyle and nutrition?

The condition affects my lifestyle all the time knowing I can’t do as much as I used to. Walking is now very difficult and the pain can just get too much sometimes. Certain foods and drink are a big no especially alcohol. It’s just so unpredictable you never know what the future will bring, even doctors have mentioned the possibility of being in a wheelchair.

Another thing is people judging you using a disability parking badge when you actually look young and physically healthy at the time. I’ve been shouted and tutted at before.

Is this the biggest effect that the condition has had on you – if not, what is?

Yes it’s a scary thought not knowing what the future holds. Also the thought of a joint dislocating and not going back into place automatically is frightening.

Do you have any advice for others who are relatively new to experiencing life with EDS?

I would just say don’t let it take over your life. Live each day as it comes bit know your limits. Oh and don’t let people make you believe that it’s all in your head.

Thank you to Lauren for answering those questions. I hope this post will reach the attention of people who are not aware of the condition and explain how it feels to live with Ehler’s-Danlos.

If you would like to hear more about EDS and current campaigns, you check out some valuable charities such as Charity Choice and Hypermobility Syndromes Association.

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