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PNH Paroxysmal nocturnal hemoglobinuria

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Old Fri Dec 19, 2014, 11:40 PM
Jeagles13 Jeagles13 is offline
Join Date: Dec 2014
Location: Australia
Posts: 1
How to cope

Hello all,

I'm new to this website and I'm so glad I've found it! I'm writing on behalf of my brother who was diagnosed with AA when he was 4 and PNH when he was 19 (Now 26 years old). He is currently not eligible to receive Soliris as he is not haemolysing (you must be haemolysing to be eligible for Soliris in Australia). He never speaks about his condition which I think has made it very difficult for him to cope. Do you have any advice on how I could support him? I don't want his anxiety to ruin his last years. His prognosis is not very good as he has chronically low platelets, is neutropenic, has clots in his liver which has now caused early stage liver disease and is no longer able to have a BMT or LT. Any advice would be appreciated. Thank you so much for reading. I wish you all good health and happiness.

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Old Sat Dec 20, 2014, 01:00 AM
JordanN JordanN is offline
Join Date: Nov 2014
Location: California
Posts: 59
Hi, Jeagles13!

What a difficult situation for you and your brother! I'm so sorry you and your brother have to go through this!

I am definitely not an expert in any way, but I did lose my mother to ovarian cancer and my father currently is on supportive care for MDS, and I have learned a few things along the way. First, everyone is different in how they deal with life's stresses (some want to talk and to know prognosis, etc while others don't), and you have to respect and support their wants. I just try to let them know that I am there if they want to talk or need help but don't push if they need space. You'll learn to read your brother's signals with time. With both of my parents, there were times when they wanted support and times when they wanted privacy and independence. It also seemed to help my parents to have things as "normal" as possible so that life doesn't become completely about their disease and treatment but mostly about the things that have always brought them happiness. With some creativity, we were able to do a lot of things that made them happy (still working for my dad!).

Also, please, don't forget about you! When your loved ones are going through such terrible illnesses, it is very hard on caregivers, too (though I feel completely honored to be able to care for my parents). Patients have their bad days, complex emotions, etc, and it can be hard to watch and you can get hurt, too. Try to find some time to take care of yourself, too!

I wish you and your brother all the best, and I will hope and pray for a happy future for you both! Love to you both!
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Old Sat Dec 20, 2014, 01:43 AM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,469

Perhaps you could check on the status of AMY-101 in Australia. It's a newer drug that shows promise for PNH treatment.

Do his doctors suggest ways to treat his low platelets and low white count?

Are you able to talk to his doctors? Perhaps your brother would allow you to talk to them directly, or accompany him to appointments, if you show him that you have a good understanding of AA and PNH and want to be supportive.
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