The winter holidays and the New Year are approaching. There are multi-hued lights, decorated trees, candles, menorahs, holiday music and wreathes. This is also the time of the year for television, mail, radio and other requests for contributions to various charities – not to mention races for cures, walkathons, swim meets, Saint Jude and other Children’s Hospital special requests for money and gifts, plus people (often in uniforms or Santa costumes) on street corners ringing bells and asking people to reach into their pockets and wallets for contributions. For most people there are memories of past holidays and family/friends, some who are no longer alive. These memories may be happy and/or bittersweet. EVERYONE has at least one significant holiday story. In the P/P community people often share personal stories of tragedy and triumph. Isn’t it amazing for these rare diseases to be so rich in the fellowship of patients and caregivers?
In my psychology practice, I have seen and worked with many patients with chronic illnesses. Many of these diseases do not have “races-for-cures” or huge research grants. Also, like P/P, many diseases don’t even have recognizable names!
Eight years ago, after almost nine months of symptoms, this “newbie” searched medical literature and libraries to find out more about this new and unknown disease of pemphigus. One call to my graduate student son yielded more information in five minutes than several days of intense personal investigation. I was given a link to the IPPF P/P discussion group on the internet! After all this time and all the futile attempts to even get doctors to take the problems seriously, we not only found the disease on the internet, but also a discussion/support/educational group of fellow patients. Reading and connecting with people living with the same disease and who had positive outcomes was an amazing experience; Hermien (The Netherlands); Carolyn (UK); Oceane (France)…we are truly a worldwide community http://www.pemphigus.org/wordpress/forum/).
One of the first emails I saw was from Skip (who is in remission, but who continues to contribute to the IPPF and the community with his remission website, see page 14). I was nervous about eating a Thanksgiving meal, but Skip sent a holiday greeting with specific advice for “newbies”. He wrote to the group about his first Thanksgiving with PV and how he just hoped he could swallow some soft mashed potatoes at the dinner. Those words of empathy and hope for others who were currently experiencing these symptoms did not fall on deaf ears. This message showed the value of community. No one had to be alone with these rare diseases and in that the human connection became a reality. No one gave up, and eventually there was a semi-miracle: the holidays of 2006 were a time to even look forward to food again!
Through local support groups and the IPPF, there are numerous past and present successes. Future successes will follow as the “community” and Foundation continue the IPPF initiatives of the registry, HMP, tissue-bank, and fellowship. This is the season when people talk more about faith, hope and charity. Charity does begin at home, inside of our community. Please donate whenever and whatever you can. Remember that for the rest of 2009 the IPPF’s Double the Difference campaign is in full effect. If you have never donated, now is the time; if you have donated in the past, please try and give a little more. Every dollar counts!
Best wishes for the holidays and for 2010!
TerryDr. Terry Wolinsky-McDonald is a licensed clinical psychologist in the Pittsburgh, PA area. She is a member of the IPPF Board of Directors and frequent contributor to the Quarterly. Her articles focus on the psychological aspects of living with P/P in patients, caregivers, and family members.