Today I am writing my first post with a bald head, a sore arm, and more than a little frustration. For the past five years I have lived with alopecia areata, an autoimmune disease that causes my immune system to attack my hair follicles. Alopecia areata, which is often simply called alopecia, causes patches of hair loss and can progress all the way to alopecia universalis, the complete loss of body hair. In the past year, my hair loss has progressed into alopecia totalis, which means I have now lost almost all the hair on my scalp. My hair has gone through many periods of regrowth and active hair loss over the years, and I have tried many different treatments to help with hair growth, producing varied results.
Recently, my dermatologist told me about a clinical trial for an experimental medication and put me in contact with one of the local offices conducting the study. I came in for a consultation on June 26th and was told that I appeared to be a good candidate for the trial. Of course, some initial testing was required to confirm this, and to serve as a baseline for any other tests throughout the study period. During this initial visit, they wanted to collect urine and blood samples, and to conduct an EKG, but after three unsuccessful blood drawing attempts, I decided to schedule an appointment to try again the following week. During the next visit, the EKG was performed, and the urine sample was collected, but there were more problems when it came to collecting blood. On the third attempt some blood finally came out, but not enough to fill all seven the tubes completely. I let the staff try a fourth time with no success, and finally decided to submit what had been collected, and hope that it would be enough. Finally, the office called me last week to confirm that I would need to try a third time. I came back today for the third appointment, but after another failed attempt, I decided not to let them try again. Bloodwork is required for all appointments related to the trial, which means I would have to deal with this issue every time. The staff gave their apologies, and I left their office for the last time.
This is a particularly painful setback for me, because I allowed myself to dream that I would have a full head of hair in just a few months, and now I am not certain that this is in the cards for me. Furthermore, one of the requirements of participation was to discontinue all current alopecia treatments, which means I have not taken any other medication for a month. I am currently in a treatment limbo and will have to soon reevaluate what my treatment plan should be. However, this experience has also made me feel more determined than ever to not put my life on hold. I have spent too much time putting things off until my hair looks acceptable, but if I am waiting to have perfect hair, I might be waiting forever.