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Old Mon Nov 7, 2016, 12:55 PM
Stephanfl Stephanfl is offline
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Join Date: Nov 2016
Location: Miami, FL
Posts: 2
PNH - but there must be more

Hi Everyone!

I am new to this forum, and appreciate the wealth of information on here.
While I live in Florida and am not a patient, I am on here for my father-in-law, who was diagnosed with PNH in February 2016, and he lives in Switzerland.

His PNH is being treated with bi-weekly Soliris dosages, and he also needs blood transfusion (red cells), every 2-4 weeks.

Many tests have been done on him, but the doctors don't know why his red blood cells won't recover, neither do his platelets. They are now thinking about the marrow transplant, but really don't know what else he could have, in addition to the confirmed PNH.

There are a few things I know about him, that could contribute to his illness.
For one, he has had two artificial front teeth since childhood (70's) and I heard before that dentists used to use a "glue" containing Benzene. He still has those two teeth today.

He also used to love to build airplane models, using glue and paint, most likely to have contained Benzene.

He has been tested for MDS (and maybe other diseases, I am unaware of), but so far, only PNH has been confirmed.

If anyone here has an idea of what else other than Soliris could help him, or should be searched for, I would greatly appreciate it.
A few additional interesting facts I want to share here, just in case someone might see a relationship to anything:

- He lost most of his hair at a fairly young age (in his 30's)
- He has had issues with his skin for most of his life (dry skin, eczema)
- He, and two of his Kids have Asthma, and had it for decades
- He has a history of heartburn/burping
- One of his daughters has the autoimmune disease "Hashimoto's"
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