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Speaking Out for Change

Editors Note: This is an excerpt from a letter we received from the daughter of a patient expressing her gratitiude for the Foundation and its efforts. We welcome letters like thisand letters for any reasonby postal mail or email and will gladly reprint them with your permission.

Enclosed is my donation in memory of my dear mother Phyllis Sigman who passed away 2002 from all the therapies and drugs as well of lack of knowledge of Bullous Pemphigoid. These brutal years of coming out of the shock and awe campaign that I witnessed from her disease have truly been the most challenging of my life.

{quotes}I don’t know why there is not a spokesperson in every single town in this country (to) educate the public about these horrifying and debilitating Pemphigoid diseases.{/quotes} It is an atrocity on the behalf of the medical community that this is not more mainstream. My mother suffered 6 different misdiagnoses from 6 different dermatologists in Arizona. I have shared this with people and told them to find out where they can go (to learn) about Pemphigus, including your Foundation.

It is a matter of life and death in some cases, as I found out the hard way. I appreciate what the Foundation is working to do and I also think that all dermatologists should not only be well educated in this disease but that the medical community should take this more seriously in every small town in this country.

I just want the Foundation to know that those of us who have lost our loved ones to the ravages of these diseases and the lack of interest or funding are never forgotten. Whenever I have a couple of extra dollars I will always support the Foundation. God Bless you all for what you are doing and I pray that no other families have to suffer the frustrations and desperation that my family had to endure. My mother was an extraordinary trooper through her 3 month battle, and perhaps if the big wheels who make the rules funded and took this more seriously she might be here today. God only knows.

Very Best Regards,

Diane Slocum

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Dear IPPF,

Thanks for all you are doing for this condition. I am a remission patient. If it had not been for the Dermatology Department at the University of Michigan I would be DEAD!! Before them, I spent 15 days in a hospital where no one ever heard of PEMPHIGUS.

I arrived at the UofM I was met by 4 Doctors & 3 nurses. They knew where they were going and what I needed. But, they gave me little hope because early intervention is the answer. I spent nearly 2 months there.

Today I am scarred and bruised but I AM ALIVE! If anyone is having a hard time finding treatment-please tell them my story of hope, persistence, remission! Unless you have been there you cannot imagine that hopelessness!! Bless you & all who are suffering.

Wanda Duncan


Publicado em Issue 54 - Fall 2008


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.