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The View from Here

One of our volunteers soliciting gifts for our Annual Meeting auction mentioned to me that several of the places she has contacted asked the question, ?Does this disease affect kids?? When they asked her that question, she thought, ?Yes, of course it affects kids.? She remembered how difficult it was on her daughter and her whole family when she was diagnosed. I immediately understood what she was talking about. Just because a child doesn?t have a disease, doesn?t mean that the ?kids? are not affected.

As we all know, people and companies are more inclined to give to organizations that involve diseases that affect kids. Also, getting any kind of media acknowledgement without cute kids is very difficult as well. And, although we do, unfortunately, know children and young adults who are diagnosed each year with one of our diseases, most of our patient base is people over 40.

We often overlook the effect that a disease like pemphigus or pemphigoid can have on a family. It is so important that not only should the person with our diseases get the support and care that they need, but that kids, spouses, significant others, grandparents, and close extended families have the opportunity to find sympathetic ears and hearts for their needs as well. Sometimes, diseases can be more devastating to the families than the patient themselves.

When I was diagnosed some 25 years ago, I was raising my 6 year old daughter alone. Although I had the support of family, my daughter was emotionally devastated. She had lost her father when she was too young to remember him, but nevertheless, he had made his imprint on her life. She started exhibiting out of character behavior which was very concerning, so I brought her to a child therapist. After 3 months of therapy, she revealed to the therapist that she was afraid that she would be an orphan, and who would love and take care of her? I told my dermatologist at the time, Dr. Clarke, what had transpired and she said, ?Bring her in. I?ll talk to her.? So I brought my daughter to see Dr. Clarke. Dr. Clarke went to her desk and took out her business card. She said to my daughter, ?You?re mother is not going to die. I want you to take this card. It has my name and my phone number on it. If you have any questions about anything, you just call me.? When we got home, she put the card in her clothes draw where it sat for many years. Her uncharacteristic behavior stopped. She never used the card, but just knowing that the card was there made all the difference in the world.

Our diseases affect everyone in our families and if anyone ever asks whether your disease affects children, the answer is always ?Yes!? Emotional issues can sometimes be more difficult than physical ones. At our Annual Meetings, we always have a Caregivers meeting during our Sunday event. We have a section on the website for Caregivers. From my observations, women seem to be more open to therapy than men, but there is nothing shameful in seeking help. Communication is so important in keeping families together.

נשלח ב Issue 58 - Fall 2009


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