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  (#1 (permalink)) Old
SilentBunny Offline
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Unhappy Rare diseae - January 14th 2013, 04:07 AM

Hello everyone, so this thread isn't about me it's about my sister, shyle, she has a rare diseae called "Paroxysmal nocturnal hemoglobinuria" Or PNH for short.

Ok, so i geuss i shall start with a bit of a background on when we first found out about it, it was December 18th, 2011. My sister had been in and out of the hospital the past few weeks and she had the symptoms that baffled the doctors and nurses. She had yellow eyes, and skin, she had low red blood cells, cloudly urine, sometimes blood in it, and the occasional time when she would pass out or fall and not be strong enough to get up. They did all kind sof tests, mainly ones for cancer though. We found out what she had on the 18th and it was around 11:03am when I got the call from my mother who in tears, she said they had found out Shyle had PNH. Of course the next few weeks were spent researching and contacting doctors and nurses all over trying to find one that would help us. We found one from the Mayo Clinic, he took on Shyle as a case study,he had never seen anyone like her before.

The next few weeks we found out there was a temporary cure, we could do a bone marrow transplant. But we would have to find a match, one of us from the familyprobably would match her, and for her there was a 80% rate of death during it. e decided we would all take the test and if it came to it, we would donate our bone marrow to save her. The enxt few weeks she had various hospital visits and multiple phone calls from doctors all over the country, finaly one of them decided to take her on as a case study. He was a doctor from the mayo clinci and appearantly this washis field of study, anyways he helped explain to our family what it was and that the symptoms were usually, yellow skin, yellow eyes, cloudly vision, bloody o cloudly urine, blood clots from no moving after staying still for 45 minutes, the lst goes on and on. Around august she got admitted to the hospital because she had fallen and lost control of her muscles, she culdn't get up. Turns out this as also a symptom of the illness, so she got a cool wheelchair to take her home in, and for the nxt month thats all she got around in. In mid-late september she started walking again, and was able to ditch the wheelchair and has been free of it to this day.

Now onto the treatment part of this illness, theres two options, one is fairly new, it's called "Soliris", it's basicly like chemotherapy for cancer patients. And the other option I touched on before it was the bone marrow transfusion. Anyways, the solirirs drug was quite new to the market and just got approved in every province in Canada except ours, until we talked to the head doctor in charge of this case. He taked to his hire ups and they somehow got the drug approved in our province, and it was going to be paid fo the first year of use! The price tag on it is $500,000. So this year around october we have to have some of that money or she doesn't get the drug! And speaking of the drug, itis fairly new and shes being tested on for how long in between it has to be given for it to work, for about a month she was on ti every 14 days, that didn't work.

So they made it every 11 days. and that is what it's at right now, but it isn't working, she still has all the symptoms as of before starting the drug.
Also, our family has taken alot more trips because people with PNH only have a life span of 10 years, so we try to make her life as enjoyable as can be.

It's really stressing me and my family and her out, so I geuss I could really use some support in these dark times. Thanks for reading this, and I will post updates here as they happen.

Last edited by SilentBunny; January 14th 2013 at 04:16 AM. Reason: Found a spelling error
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Re: Rare diseae - January 14th 2013, 09:53 AM

Hey there,

Wow, this is truly a horrific thing to see happen to somebody (also going through it from her point of view).
I would like to see updates on how she's going. My prayers are with you and your family.


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Re: Rare diseae - January 14th 2013, 04:09 PM

Originally Posted by Hope To Cope View Post
Hey there,

Wow, this is truly a horrific thing to see happen to somebody (also going through it from her point of view).
I would like to see updates on how she's going. My prayers are with you and your family.

Thanks soo much!
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Re: Rare diseae - January 23rd 2013, 11:04 PM

Hey, I am so sorry to hear this. It just breaks my heart to see things like this happen..

Anyways, please keep us updated on how she's doing and know that we're all here for emotional support and all our prayers go out to you and your family.

I hope that things improve, don't give up!


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and jump in the fire, if it burns you.
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and we'll turn to ashes.

Kinda like the way you tell me,
"Baby, please come home. I need you here right now.
I'm crying underwater so you don't hear the sound."

What if I can't forget you?
I'll burn your name into my throat.
I'll be the fire that'll catch you.
What's so good about picking up the pieces?
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