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Chronic Health Conditions Discussion and Support

auntAgonist

(17,257 posts) Sun Nov 3, 2019, 07:24 AM Nov 2019

8

I would be willing to bet you've never heard of F.O.P. please read.

http://ir.biocryst.com/news-releases/news-release-details/biocryst-begins-phase-1-trial-bcx9250-oral-alk-2-inhibitor

https://www.ifopa.org/what_is_fop

My nephew has it. It is incurable and there are few ppl in the world with it. It's horrible, painful and life shortening.

9 replies

= new reply since forum marked as read

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I would be willing to bet you've never heard of F.O.P. please read. (Original Post) auntAgonist Nov 2019 OP

I'm sorry your nephew has FOP, had never heard of it.☹️ Bluepinky Nov 2019 #1

Thank you for reading and for your kind words. auntAgonist Nov 2019 #6

Im so sorry...(((hugs))) samnsara Nov 2019 #2

Thank you for reading and for your kind words. auntAgonist Nov 2019 #7

I had heard of this condition but didn't know the name....its truly awful.. Pachamama Nov 2019 #3

I don't know yet if he's eligible. He's fairly well along in the disease. auntAgonist Nov 2019 #5

Had not heard of it, thanks for posting. OMG, it is truly dreadful. So sorry to hear your nephew has RKP5637 Nov 2019 #4

Thank you for reading and for your kind words. auntAgonist Nov 2019 #8

Sorry to hear about your nephew captain queeg Dec 2019 #9

Bluepinky

(2,323 posts)

1. I'm sorry your nephew has FOP, had never heard of it.☹️

Reply to auntAgonist (Original post)

Sun Nov 3, 2019, 07:31 AM

Nov 2019

auntAgonist

(17,257 posts)

6. Thank you for reading and for your kind words.

Reply to Bluepinky (Reply #1)

Sun Nov 3, 2019, 05:29 PM

Nov 2019

samnsara

(18,281 posts)

2. Im so sorry...(((hugs)))

Reply to auntAgonist (Original post)

Sun Nov 3, 2019, 07:34 AM

Nov 2019

auntAgonist

(17,257 posts)

7. Thank you for reading and for your kind words.

Reply to samnsara (Reply #2)

Sun Nov 3, 2019, 05:30 PM

Nov 2019

Pachamama

(17,010 posts)

3. I had heard of this condition but didn't know the name....its truly awful..

Reply to auntAgonist (Original post)

Sun Nov 3, 2019, 07:37 AM

Nov 2019

So sorry to hear that your nephew has this condition. Will he be participating in the trials that you are mentioning here?

auntAgonist

(17,257 posts)

5. I don't know yet if he's eligible. He's fairly well along in the disease.

Reply to Pachamama (Reply #3)

Sun Nov 3, 2019, 05:28 PM

Nov 2019

He has pretty much NO mobility and 'sits' reclined in a specially designed chair.
I do know that he's going to Florida to meet some researchers and Drs and others who are afflicted with the disease.

Thank you for your kind words.

kesha.

RKP5637

(67,112 posts)

4. Had not heard of it, thanks for posting. OMG, it is truly dreadful. So sorry to hear your nephew has

Reply to auntAgonist (Original post)

Sun Nov 3, 2019, 08:58 AM

Nov 2019

it.

auntAgonist

(17,257 posts)

8. Thank you for reading and for your kind words.

Reply to RKP5637 (Reply #4)

Sun Nov 3, 2019, 05:30 PM

Nov 2019

captain queeg

(11,780 posts)

9. Sorry to hear about your nephew

Reply to auntAgonist (Original post)

Mon Dec 16, 2019, 06:51 PM

Dec 2019

I’d not heard of this condition either. Sounds like not much can be done but I see you are looking into trials, hope something comes of that.

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