One of the newest treatments for pemphigus is intravenous immunoglobulin (IVIG). Immunoglobulins are one of the major classes of proteins in blood. IVIG is collected from normal blood donors, pooled, highly purified, and treated to destroy viruses and bacteria. IVIG…
매 년의 보관소： 2008
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 this – and letters for any reason – by postal…
문제 54 - 가 2008 에 올린 글
Support Groups: How WE Can Help
When I was first diagnosed with PV, I was devastated as most people are. It had come on very fast, three weeks from first symptom, and very viciously. I could not eat any solids, I could not stand —…
문제 54 - 가 2008 에 올린 글
Have YOU Been Online Lately?
The IPPF website redesign continues to bring in compliments and comments from around the world. The IPPF Community site is where people interact with other patients and caregivers on all issues related to pemphigus and pemphigoid. You can register for…
문제 54 - 가 2008 에 올린 글
Let’s Raise Awareness
There have been two key challenges to raising awareness and funds about the devastating effects of pemphigus/pemphigoid — to front-line medical professionals, donors, and corporate sponsors. In the early stages people tell me they feel ashamed, embarrassed, and frustrated when…
문제 54 - 가 2008 에 올린 글
LA BBQ Serves Up Good Times for Everyone
Every summer people fire up their grills and invite friends and family over for an old fashioned bar be que.
문제 54 - 가 2008 에 올린 글
Upcoming PEM Friends Meetings
Friday, 10 October 2008, PEM Friends will meet at 12.30pm for an informal lunch on the 6th floor of Peter Jones, Sloane Square, London. We’ll be joined by guest dermatologist, Dr. Jane Setterfield, BDS, MBBS, DCH, DRCOG, FRCP, who has…
문제 54 - 가 2008 에 올린 글
Away Weekend Enjoyable and of Great Value
PEM Friends, the UK wing of the IPPF, held their annual get-together at Carolyn and Raymond Blain’s estate Westerhill, near Ashton-under-Lyne, Greater Manchester, England, over the weekend of the 27-29 June 2008.
문제 54 - 가 2008 에 올린 글
Misdiagnosis: More Reason for Increased Advocacy & Awareness
Because pemphigus and pemphigoid are such rare diseases, one of the biggest problems in achieveing successful treatment is misdiagnosis. Misdiagnosis is considered to be the most common cause of patient safety issues. Delays in treatment and malpractice suits are noted…
문제 54 - 가 2008 에 올린 글
The Case for Continued Public and Private Commitment to Rare Disease Research and Development
This is a paper written by a high school student with PV and was mentioned in the Spring 2009 Quarterly.
건강 및 라이프 스타일 에 올린 글
