A federal judge on Monday struck down patents on two genes linked to breast and ovarian cancer. The decision, if upheld, could throw into doubt the patents covering thousands of human genes and reshape the law of intellectual property
A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline.
As you read this issue I’m sure that you will be as amazed as I am about all the ways that members of the community reach out to serve others. This is the Support Issue, our time to highlight, thank and congratulate people and projects that help individuals; support community groups; advocate with doctors; dentists and nurses; do research and write articles; work to get insurance or medicare coverage; serve on our Boards; present at meetings; write grants; throw teas, BBQ’s or events to raise money; or offer an open heart, warm shoulder, or understanding ear to others in need.
I was working with one of our Peer Health Coaches (see Susan’s story on page 7 for more info) the other day, who shared with me how she has been driven to contribute to change the experience of the next newly diagnosed patient and, in the process found what so many of you speak of — a powerful way to make a difference, to take your challenging experiences and use them to expand compassion and insist on better options for everyone. Your peers share this determination, and give of their time and talents in so many ways. Read over the great Awareness Building Campaign featuring Miki who has spread the word to over 1,700 Dermatology Physician Assistants around the US! Every talent can be used to help others.
We’ve been working on planning the Annual Meeting these last few months, (more at www.pemphigus.org/2010am) it’s like planning a family reunion, looking forward to seeing old friends and excited to embrace the newcomers with the warmth of this community. Many of you will be delighted to see
Janet, our Founder, Dr. Razzaque Ahmed from Boston, your Peer Health Coaches (PHC), members of our Board and Medical Board, your favorite doctors, our resource partners and Will, at another (or your first) Annual Meeting.
This year there will be topic-specific breakouts and a “track” for people interested in finding out more about becoming a PHC. Those interested can email Marc Yale (see Marc’s article on page 9) to indicate your interest in participating in the Peer Coach Track. We also have added, per your feedback, more Q&A sessions and more time to gather and connect. It is important for everyone in this community that you come, share your wisdom, show our power, and laugh, cry and connect with this amazing group. You’ll be glad you did, I certainly am!
Part of the training in most psychology doctoral programs involves going through your own personal therapy or analysis. There are two main reasons for this: 1) It is important for psychologists to truly understand themselves in every way, especially to recognize issues if they occur when doing therapy, and 2) to experience being on the “other” side of therapy and to experience personally that asking for help from a professional is not a sign of weakness.
Everyone does need support and a supportive network. This does not mean you are weak, but that you are human. People really do need people, as the song goes. This is true whether or not you have, or know, or care for a person with chronic illness. There are, however, differences in the amount and kinds of support people need — and the kinds of support people are able and willing to provide.
Back in the early part of the 20th century a psychologist (Sullivan) stated that children would be okay if they had just one good friend by age 11 or 12. More than one friend was fine, but only one was/is necessary. The kind of support system the patient already has is a very important factor. Do you already have the support of someone you can count on? Not everyone needs to see a professional counselor, social worker, therapist, psychologist or psychiatrist.
How does someone know when they need support or what kind of support they need? How does someone know how to ask for support or help or how to offer it when someone else needs support? There are no blanket answers here, because even with universal human needs, there are innumerable individual differences in people.
When I received my own diagnosis of Pemphigus I did what I would tell anyone to do: I consulted with a professional, and over the years I have checked in every couple of years to make sure I have an objective perspective. Sometimes it feels like jumping through hoops (e.g., just trying to get to the right doctor or treatment) , and sometimes it feels like leaping through “flaming” hoops (e.g., trying to get insurance coverage, etc.). When running the Pittsburgh P/P support group, I realized that for many/ most patients it is most important to reach out when they had their worst symptoms.
How a person will react/ respond to the illness depends on many factors. If you find yourself isolating yourself, tearful much of the time, feeling helpless or hopeless, not enjoying things previously enjoyed or having sleep difficulties (difficulty falling asleep, difficulty staying asleep, or early morning awakening) those are some indicators that at the very least a professional consult may be critical for the best quality life under what may be extremely difficult conditions.
My belief is that everyone is entitled to feel the best they can under even extraordinary conditions. Sometimes this involves prescriptions of psychotropic medications, psychotherapy, or some combination of both. Some people have a need to discuss very personal and difficult subjects on a regular basis and later need only “booster” checkup appointments. (I am available for emails and phone calls) There is no right answer.
Also, support can come from asking someone to help with basic activities like grocery shopping, cooking or laundry. Some people are better at support through doing, rather than being (there for you).
The IPPF and other groups provide a special kind of connection (a “common bond”) for people (and caregivers) with these illnesses, and innumerable personal relationships and precious friendships have been formed over the years. In many cities and other countries local groups have existed for more than a decade! Kudos to those who are running groups and to those who are in remission and continue to be active in the P/P community.
At the upcoming Annual Meeting in Philadelphia, PA at the end of April, 2010, I look forward to meeting and talking to as many of you as I can. The meeting includes support in the form of information, access to the world’s leading doctors in P/P, and the connection with others. There will be opportunities for breakout sessions tailored to your interests, and do share any suggestions about other topics which may be helpful in the future.
Think about ways you may be able to enlarge your own support systems or reach out to others who may be having difficulties. In the meantime, remember Frank Sinatra’s mantra: DO BE DO BE DO BE DO!
If anyone would have told me four years ago that I would be writing this narrative, I would not have believed them. My name is Susan Gonzales and I was diagnosed with pemphigus vulgaris (PV) in February of 2006. I was so sick by the time of this my diagnosis and my feeling of despair and hopelessness was all consuming. This PV diagnosis, as frightening as it was, was welcome as I had bounced from doctor to doctor and had test after test, for eight months with no answers as to what was happening to me.
Finally, a new group of doctors put a name to this disease that was attacking my body. A disease whose name was as frightening as the lesions that covered my throat, the inside of my mouth and had now began on my lips. As I look back, it was much easier to deal with this disease when the lesions were confined to my throat and mouth. Being in outside sales, on a day when I could muster enough strength to meet with a client, they may have suspected that I did not feel well, but never knew why. But, a new level of anxiety overcame me when the lesions began appeared on my lips. The looks and stares from people were hurtful. I just wanted to hide.
After being diagnosed in August 2007 with Bullous Pemphigoid (BP), I wondered what I could do to help others who were suffering with this disease. I felt that there had to be something that I could do to help. I became as educated as I could about the disease, I became active on the “Community” website (community.pemphigus.org) and I learned how to manage my disease. Then, the IPPF gave me an opportunity to help out as a “Certified Peer Health Coach” (PHC).
At this year’s Annual Meeting in Philadelphia, you will have many opportunities to make a difference in the lives of others who suffer from our disease by learning about, and considering becoming an IPPF Peer Health Coach.
This program matches Coaches with participants who will benefit from support. I will be conducting and hosting three, one-hour PHC sessions to help you learn about, and consider participating in, this crucial program.
As our community continues to grow, so does both the IPPF’s Peer Support and Health Management Programs. The IPPF’s Health Management Program was developed to help new and existing patients diagnosed with Pemphigus/Pemphigoid manage some of the challenges of the disease. As a bonus, the data collected helps doctors and scientists to get a better understanding of the disease and treatment outcomes through research questions.
The Health Management Program improves our understanding of the disorder, improves treatment, improves communication with healthcare providers, and give people an opportunity to find an educated, experienced and non-judgmental outlet to share experiences, and to learn how others are managing the disease.
If you would like to learn more about becoming a
Certified Peer Health Coach, please contact me at
916-922-1298 extension 1006, or you can email me at firstname.lastname@example.org to get started.
Marc Yale is a Certified Peer Health Coach for the IPPF working to better the lives of patients around the world.
Most people first come to the Annual Meeting when they are in the worst throes or the early stages of these diseases, in pain, angry, alone and uncertain. Most leave having met many, many folks who are in “remission,” that magical word, (see inspiring stories of remission at http://www.pemphinremission.com), who are filled with laughter, joy, passion, gratitude and yes, a “moon-face” or two. How can two days in a hotel ballroom alter the lives of so many so fast, over and over again each year?
For people to move through this transition from newly diagnosed to capable advocates for their own health and well-being they need quality information, a sense of hope, and the support of others who understand where they are, and where they can get to.
The quality information comes from the leading doctors in P/P both in the lab and in the office, or what we call “bench to bedside”. At the Annual Meeting you will hear presentations from experts in oral medicine, new research findings and medicine advances. Not to mention the super-practical advice from you peers on how to soothe the pain and the worry.
The most gratifying results of the meeting are the sense of hope that blooms in the new folks when they see rooms full of laughing, hugging, perfectly “normal” folks. Most people do get through the major suffering that comes early on, many get off drugs entirely and all demand and receive better care after being armed with information, advice and even Peer Health Coaches (read Marc’s article on page 7) to help them advocate for their own best care.
Finally, getting together with others gives voice to the larger needs of this community. More awareness in the medical community to avoid long diagnostic delays (see Miki’s story on our front cover); sharing data in the patient Registry (see story on page 13) to support drug research and best practices in treatment plans; talking with Board members about how you can serve others or needs you see that you can help address; and most often shared: the sense of purpose that comes along with taking such a challenge as P/P and turning it into a way to provide meaning and support to others who come after.
Who wouldn’t want to be a better informed, healthier, stronger patient that can make a difference for others?
TOP LEFT: Ever the showman, IPPF BOD President Dr. Dave Sirois dons a new look at the 2009 meeting.
TOP RIGHT: Attendees from the 2009 AM in Los Angeles listen in.
BELOW: Drs. Grant Anhalt and Ani Sinha at the 2008 Celebration Dinner.