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Erdheim-Chester Disease

Morning everyone,

Like quite a few new members I have waited a couple of months before my first post.
After a journey of 2 years, multiple blood tests, lumbar puncture, x rays, CT, MRI, PET, DAT scans and a biopsy I was diagnosed with ECD in April this year. I first went to the doctor with slurred speech, and was referred to a Neurologist. I noticed my fitness was also on the decline along with fatigue. I have also been diagnosed with Cerebellar Ataxia. This is secondary to ECD.

At 51 I am in the process of Medical Retirement from the fire service. This was never a club I thought I would be joining. Luckily I had a private Critical Illness insurance policy payout. Like many other members on here I find it frustrating and annoying that only a few people take this very seriously. I’m sure my work thought I was playing the system because I look “OK”. The best way I find to describe myself is, If I was a car on the outside the bodywork is ok, turn the ignition on and the dashboard will light up like a Christmas Tree!! This is an extremely rare blood cancer with no cure. 1-10,000,000 people diagnosed. I am due to start treatment very soon. We have a holiday to Greece next week and my consultant is happy to wait until I return.

Thanks for everything,


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Hi @Gary, welcome, I am glad that you have posted on here.
I picture you as gleaming Porsche Panamera, I am probably more an original mini myself !!
Gosh you have had nearly every medical check there is.
It must have been a real double whammy of shocks for you to be diagnosed with 2 very rare conditions and at such a young age.
Yes, I think we all agree that hidden conditions do not get the recognition that an arm in a fluorescent coloured plaster cast does. Don’t get me started on my pet hate which is when people say ‘oh, you do look well’ when I am feeling so rough inside.
Please let us know how the holiday in Greece goes, a lovely time of year for a break.
Also how the Medical Retirement progresses.
Then we are here for you to say how it really is for you during your treatment.
Keep posting

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Hello Erica, thanks :blush: It seems our pet hates are the same! I’ve had enough of people saying “yeah, I do that as well”
I’m due to start on Dabrafenib and Trametinib when I return :crossed_fingers:t2:

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Hi @Gary I don’t think anyone can understand what fatigue is like unless they live with it. Have an absolutely wonderful time in Greece and we hope to hear from you on your return.

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