I was unable to eat a normal diet and large areas of my mouth, throat, and nose became affected. I am a professional clarinetist so this was bad news. My consultant, aware of the impact, stepped up treatment from a mouth rinse to systemic medication. The prospect of high levels of powerful drugs filled me with dread.
I found the IPPF web page and contact a Peer Health Coach. I was soon contacted by Sharon Hickey. She patiently listened to my story, sent information describing various treatment options. It was very reassuring when my dermatologist suggested a similar plan. It was even more reassuring when Sharon told me that my consultant, Dr. Richard Groves at Guy’s Hospital, London, is highly respected in the field of immunobullous diseases.
The treatment came just in time for my disease was progressing in strength and scope. Lesions cropped up on my back and scalp. The sores in my mouth were distressing and painful and for a time all but derailed my career and profession. I found the early days of medication, almost worse than the disease itself. Now, several months into treatment, I see the benefits! I can eat a wider variety of food again and recently gave my first concert … pain free!
The IPPF Peer Health Coach Program has been wonderful! For a while, I felt I had no recognizable future. However, Sharon has been with me all of the way, offering reassurance and information. Her sheer joy and zest for life has been a great encouragement and helped me to get beyond that point. Sharon put all of this into perspective and I have been able to accept the seriousness of the disease while learning not to let it totally dominate my life.
I was amazed when Sharon announced she was coming to England and that we should meet. I had never met anyone with pemphigus before. Sharon enjoys music, so we arranged to attend an Advent service at St. Paul’s Cathedral in London where I teach clarinet, sax, and recorder. The service was beautiful and dramatic with the choir singing superbly. The journey from darkness to light (represented by plunging the Cathedral into darkness) is a potent symbol of hope. It was such a pleasure to introduce Sharon, her family, and friend to Father Michael, the school chaplain. It brought two parts of my life together in an unexpected and happy way.
I am lucky in many ways. I was diagnosed quickly; have mild disease that is slow to progress; receiving treatment from a very able dermatologist; and healing well. I am beginning to look beyond pemphigus to a more balanced life. This sense of balance and calm has come from the generosity of other people with the disease. Siri Lowe of the Pemphigus Vulgaris Network, and the many kind people on the Facebook Pemphigus Vulgaris page who have been a constant support. The IPPF website has provided me with a reliable source of information. The IPPF Peer Health Coach program — and Sharon — have brought a sense of security back to my life. I am so glad I had the chance to meet Sharon in person to say thank you!