Hello everyone,
My Name is Lois and I joined this site because my
daughter was diagnosed with PNH and I really do not
know anything about the disease.
I have read the basics but wish to know more then just
the medical jargon which I must admit is rather hard
to understand.
I understand this is a life threatning disease and
that the prognosis is 10 years. I do not know if I
believe in that prognosis.
I was diagnosed with Inflammatory Breast Cancer and my
diagnosis was 3 months to a year. That was 3 years
ago now and I still show no signs of re-occurence. I
believe a great deal of the cure is in the mind and
the desire to beat the disese.
I would like to hear from anyone who has had this
disease for longer then the 10 years. I would also
like to hear from those who have found vitamins or
herbs that seem to help.
Thanks, Lois
--- Margaret Norton <mnorton@...> wrote:
> Everyone, please welcome our new member,
> grandmalois1.
>
> Lois, I hope you'll introduce yourself! Our group
> is a close-knit
> bunch of people who are very welcoming and very
> knowledgeable about
> PNH. This site was begun 4 years ago by Rebecca
> Gaskin, who started
> it to keep in touch with a few other PNH patients
> she had found.
> Gradually more people found the site, until now we
> have nearly 200
> members. Rebecca passed away last July, but this
> group, the result
> of her love and hard work, remains as her legacy.
>
> We are in the process of moving to a new, larger
> site:
> www.pnhdisease.org I hope you'll register there as
> well. When the
> bugs are worked out of the new site, we will be
> closing this site.
>
> I hope you'll introduce yourself and tell us how we
> can help you.
> Again, welcome!
>
> Margaret
> PNH since 1961
>
>


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