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Rare diseases day today

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Whiff Tue 28-Feb-23 15:09:28

Only just found out today is rare diseases day. Never knew there was one.

To anyone who has been ill or has a loved on who has been ill for a long time and no one can tell you what it is. Never give up hope.

I am 64 and in April I finally got my diagnosis and my Neurological condition is rare and I was born with. It's only because my neurologist had my blood genetically tested that I finally know. But the test for it has only been available for the last 10 years. For my condition.

I moved 100+ miles to live here my old neurologist never thought to have my blood genetically tested. But better late than never.

At least now I am getting the drug that can help with my symptoms.

I don't expect any feed back but just wanted to say never give up hope . And in the mean time live your life to the full as best as you can.

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Susan56 Tue 28-Feb-23 15:35:46

My daughter has a rare condition.She didn’t have to wait as long as you Whiff for diagnosis.Even though she had symptoms and saw consultants since early childhood she was finally diagnosed in her late twenties.

We are so proud of how she lives her life.Even when she is in severe pain you wouldn’t know.She couldn’t continue in her chosen career so retrained and works full time.

I totally agree Whiff.Never give up hope and live life to the full as much as you are able.

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Susan56 Tue 28-Feb-23 15:36:43
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My daughters post today💪🏼💪🏼💪🏼

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Whiff Tue 28-Feb-23 15:58:44

Susan what a lovely post by your daughter. I hope she has a support group as I found one after my diagnosis last year. I know I am normal for my condition and not just weird.

Our group has 918 members and that's world wide. It's nice to know this country knows more about this condition than places like America, Canada and Australia.

I am in constant pain and at times it flares but like your daughter just keep going and living life to the full. 🌹🌹for you and your daughter.

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Susan56 Tue 28-Feb-23 16:05:05

Thank you Whiff.💐 for you too.

My daughter is a member of a support group.They have been so helpful and especially in the early days of her diagnosis she got more support from them than from her medical team.

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