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PAROXYSMAL NOCTURNAL HEMOGLOBINURIA (PNH) 

Support Group

 

I have been luck enough to find a great group of people with PNH -  A great support group is PNH One List - Please Join Us

E-Mail me your Picture, Webpage and/or E-Mail address for inclusion.  Or send me a Photo and I will have it scanned and placed here.  You don't have to be alone.

Last Updated: 06/19/2006

Alison Smaltz  Diagnosed with PNH January 1999, BMT April 1999.

Present Condition:  GREAT!!

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Rebecca - Pictured here with husband Brian.

E-Mail

In Loving Memory of Libbey

Rebecca Wrote:

 Libbey, our fellow friend in PNH passed away away on Wednesday January 12, 2000. She had gone into the hospital for surgery for a stunt in the vein by her liver. Apparently, the clots in her liver never dissolved, and they thought this would help. During surgery, her liver was torn, and she kept bleeding. They gave her lots of blood.

Libbey was dedicated to her life with Jesus, and will be with him again someday. Please everyone, Pray for her husband, Jim and daughter Christine.

Libbey was 32 yrs old. And was diagnosed with PNH in Spring of 1999. But possibly had had it since late 1997.

Libbey was the first person I met/talked with/emailed who also had PNH. She brought light to my darkness of feeling alone with PNH. She pointed me in the direction of finding Alison's web site, which in turn helped me find many of you and create this list of support.

I find comfort in knowing she was living life walking with Jesus in her heart and life. She will not suffer any more, but be glorified when Jesus calls her to His kingdom when judgment is passed on all.