Sharing Your Data; Giving the Gift of a Better Life

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.

In my darkest moments with this disease,  talking about this with anyone other than my doctors and my close family, made this disease too real for me, pushing these thoughts away, even though if only for short periods of time allowed me to feel as if I were “normal”. That is until I looked in the mirror and saw the lesions on my lips and in my mouth, then I would quickly be brought back to reality.

Until this I had been healthy all of my life and a person very much in control of every aspect of my life, that is why this disease not only devastated me physically, but mentally as well. This was something that I just had no control over. Then be given the news that this disease was very rare, not curable and that I would most likely be on some form of medication for the rest of my life, was almost more than I could handle. I had gone from this very independent, strong woman, who was always the rock for everyone else, to a sick and dependent person in just eight months. I didn’t know this person who was so ready to just quit and give in to this disease. I had never been a quitter in my life and for the first time I was giving up. The feeling of isolation and despair was overwhelming.

Fortunately, the prednisone “kicked in” quickly for me and although I physically still looked sick, it felt so good to feel good and my mind began to heal as well. There were setbacks along the way, which seemed to pull me back into the self pity phase, but after my doctors determined the best mix of medications for me I continued to get healthier each day. That’s when the anger began to set in and then the determination that I was not going to let this disease win. It has been a long journey to get to the place where I am today, and I know now that what I have experienced has been experienced by many of my pemphigus and pemphigoid peers as well.

I am a firm believer that everything happens for a reason and that something good comes from some of the darkest times in our lives. It has for me. As I reflect on the many people that I have connected with as a result of this disease, I feel blessed. We all share a common bond that sustains me on a daily basis.

I also believe that it is my turn to now give back to others who share my disease. Sharing my story in hopes that it will help someone who is struggling in their Journey — sharing my story lets others know that there is hope and that we can live a productive life in spite of this disease.

For me the most important contribution that I feel that I can give is to share my medical information, by participating in the Health Management Program and the Data Registry. Documenting my medical data and my progress will help support future research and assist in developing the best practices for treatment of these diseases. It is only through through research that a path will be paved for pemphigus and pemphigoid solutions/treatments and this will help future patients obtain the treatments that are so desperately needed for them.

If I have any reservations about sharing my medical data, I only have to take myself back to February of 2006 and remember how sick I was and know that if by sharing this information will make it easier for one future P/P  peer to obtain a quicker diagnosis and or better treatment options, than I will do this willingly.

We are a small community, but together, we can make a difference for future generations of patients. I ask you to please consider joining me in helping these future P/P patients. Let’s arm doctors and researchers with the data and the information that will hopefully one day lead to a cure for our diseases. Wouldn’t this be a wonderful gift to give?

Susan is a IPPF Peer Health Coach and PV patient.