My Story for Rare Disease Day

Today is Rare Disease Day, where people like me can share our stories, connect with other people in similar situations, and know that we are not alone.

Do I have a disease or a condition?

I have only just learned about Rare Disease Day thanks to one of my favourite bloggers, Caz at Invisibly Me. It’s funny how I only found a sense of community through social media when it comes to my situation. Doctors never told me I had a “disease,” it has always been called a “condition.” That seemed to minimise my symptoms and the way I felt about myself and left me feeling ungrateful and selfish throughout most of my late teen and 20-something years. I have Lymphedema Distichiasis (LDS) and was born with it. I carry a gene called FOXC2 and that was discovered through genetic testing when I wanted to start a family with my husband. I did not want my children to suffer like I do and was told I had a 50/50 chance of passing on my condition. I now have two children, and neither are showing symptoms, so my husband and I must be a good genetic match.

Trying to find my community

When I first started using the internet all those years ago, I tried to research LDS to find a community or a support group. It seems that only US medical websites have published anything about it, and it took me a while to realise that they spell Lymphedema differently to me. I used an English spelling: Lymphoedema, which in the early days didn’t bring up any search results. Up to now I only know that I have LDS, my younger brother has it, my father has it, and possibly a few extended family members on his side. We believe it came down my paternal grandmother’s genetic pool, but of course we can’t explore that because those sorts of records were not kept.

A lifetime of surgeries and medical treatment

All my life I have experienced surgeries to remove ingrowing eyelashes, to reposition my eyelids and to try and stop the eyelashes growing back again. I have pulled eyelashes out with tweezers and continue to do so regularly, and I have used lots of different treatments via Royal Manchester Eye Hospital. More recently I met a new doctor at Mid Cheshire Hospitals, and he put me on a program of autologous eyedrops through NHS Blood and Donor. I have used the eyedrops for about eight months now and they do seem to be working which is fantastic. While I still experience mild pain, it is far better than it used to be. I am also on a drug trial to treat suspected Corneal Neuralgia. My medical files must take up a whole storage facility somewhere!

More information

Anyway, this is me, and that is my story. I just want to meet people not in my family that have Distichiasis, so I can compare symptoms and treatments. The numbers are so rare that we don’t have official data to compare us, which means that I am definitely a candidate for Rare Disease Day. How about you?

If you want to learn more about Rare Disease Day, click here.

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About SpookyMrsGreen

SpookyMrsGreen: Mindful parenting and modern pagan lifestyle. See my blog for exclusive special offers, discount codes, health advice, eco-friendly tips, book reviews and more! Search #TheRedcliffeNovels and meet the vampires and werewolves of Cornwall, England.
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4 Responses to My Story for Rare Disease Day

  1. Invisibly Me says:

    This is awesome! I’m so glad you wrote this – I knew nothing about LDS until I “met” you online & I’m glad to have educated myself a little on what is a very poorly appreciated condition.

    I think the genetic love match with you & hubby is a nice way of looking at it 😉

    After everything you’ve been through, I’m so very glad to hear the drops are still doing well 8 months into their use. I hope that continues.

    Fab post 💜💙💚💛 xx

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