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Erdheim-chester disease


At last, after a bit more red tape :blush::crossed_fingers:t2:

Hi @Gary, I just saw your post and wondered if you needed any support? Looks like you have lots of information there but if you do need to discuss anything please do contact the Support Services Team Blood cancer information and support by phone and email | Blood Cancer UK Take care Gemma

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Thanks Gemma. I’ll bare that in mind. The support I have been getting from the NHS has so far been brilliant. I have just finished 6 weeks of counselling with the Firefighters Charity. The biggest struggle I’m finding is because this disease is so rare and nearly every Medical professional we speak to has never heard of it. I’m just glad that the fight back has started.

Take care and have a Happy Christmas and hopefully we’ll all have a better 2022.

Gary

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Hi @Gary great to hear from you again and it is so difficult when you have such a rare blood cancer.
I am glad you have had your 6 weeks of counselling and yes, the fight back has really started,
Please keep posting and letting us know how you are doing.
A happy Christmas and better 2022 to you too.

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Hi @Gary. How are you doing?

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Hello Nicola, thanks for asking. I had a bad day yesterday. I don’t know if some of the side effects from the the meds are starting to kick in now, but if not it does feel like it’s a bit of a set back as we tend to put all hope into the medication. Early to bed last night, up today feeling like I’d been partying 'til 4 am!!!
The ECD Global Alliance now showing 750 confirmed WORLDWIDE, and 41 UK. Nearly enough for a coach trip :sweat_smile:
Hope you’re well, and hopefully a better year for everyone :crossed_fingers:t2:

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Morning @Gary. The side effects must be frustrating. Are they listed as side effects of the medication?
Definitely enough for a coach trip! Have you managed to make contact with any of them?

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Morning Nichola, one of the side effects is fatigue, along with others. I’ve connected with a few. We are a very select group!

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Oh @gary, those side effects do sound debilitating.
I think being part of a very select group of like people is very special.
Take care and be kind to yourself you and your body are going through a lot emotionally, physically and practically.

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Thanks @Erica I think I’m still in denial a little :confused:

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Hi @Gary great to see you here. Sounds like you’ve got this covered, you seem very positive. The side effects won’t be forever. Great that you’ve found the other 40 and of course everyone on here is always available for support when needed. Let us know how you get on.

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