Supporting People on Rare Disease Day – My Story shared on Despite Pain blog

Today is Rare Diseases Day and I was delighted to be asked by Elizabeth on Despite Pain blog to share my story of having Cauda Equina Syndrome, alongside Tom Seaman who has Dystonia; Jenny Jones who has Familial Adenomatous Polyposis and Short Bowel Syndrome; and Zoe (aged 12) who has Chronic Recurrent Multifocal Osteomyelitis.

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Supporting People on Rare Disease Day – Despite Pain

It can take a lot of courage to discuss health issues with friends and family, but sometimes people put their own health in the public spotlight to help others.

Sharing Matters

When someone has a rare disease, there is often very little information and support, therefore, what these people do really matters so much to so many people. Sharing their stories matters too.

Following on from my post last week, Why We Need to Support Rare Disease Day, I’d like to support a few people who have rare diseases by sharing their stories.

To read the rest of Despite Pain’s post and to read MY story please click here

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The lowdown on Cauda Equina Syndrome
What does cauda equina mean? Well quite literally it is the horse’s tail and the bunch of nerves exiting the base of the spinal cord resemble a tail.
Cauda equina
Cauda equina syndrome occurs when something invades the spinal space and compresses the cauda equina bundle of nerves. Most commonly this is a lumbar disc herniation (as in my case where the disc completely ruptures).
The defining symptoms for CES are
  • Sciatica (neurogenic pain) in the lower back and radiating down one/both legs
  • Bladder dysfunction usually leading to retention but occasionally to frequency, change in flow or incontinence
  • Altered perineal sensation or lack of feeling in the “undercarriage”!
  • Loss of some sexual function/sensation

For more information read:

Science Direct

British Journal of General Practice

5 thoughts on “Supporting People on Rare Disease Day – My Story shared on Despite Pain blog

  1. Losing the Plot

    Hi Claire, I hope you don’t mind, I have included a link to your post, xxx

    I think what you have written is incredibly brave, you have a lot to cope with, and you do it with dignity.

    Liked by 1 person

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