Early in my Pemphigus Vulgaris treatment I met Dr. Thomas Chu, he was involved with the Rituximab trial at the University of Buffalo. I was fascinated by him because we didn’t just talk about the illness – we talked about nutrition, Eastern medicine, and hair loss. Soon after we met he was offered a Dermatology Residency at Wayne State in Michigan and moved.
I rolled into South Detroit on a clear June afternoon, quickly found my way to the private library in the Veterans hospital where I met with Dr. Chu. He has a personal interest in hair loss/replacement and was the doctor who reassured me that mine was going to be a temporary issue. Even though at the time it was a HUGE emotional stress…his calm way of explaining resinated deep inside of me and I’ve tried to communicate it forward so people don’t waste money and energy on this aspect of being sick.
We spoke about why people with autoimmune disease have thinning hair/loss. What it basically comes down to is that the hair loss itself is not caused by the medications we take, but instead the illness itself. According to Dr. Chu; hair loss starts 2-3 months before a follicle falls out. When the body has massive stress/illness, it focuses on healing the body, and disrupts the anagen (growth) hair phase which kicks it into the telogen (dying) phase.
Human hair is fascinating because unlike animals who shed their undercoat at once, we constantly shed. Random follicles die at different times so most people never see a pile of hair in the tub, but instead have some stuck to their comb. The growth period is 3-5 years on average and keeps the bulb of the hair full, thus tight within the skin surface. When our bodies get sick, or we do something like a fad diet, all of the energy goes into ‘fixing’ whatever is wrong and doesn’t feed the hair. Not random follicles, all of them – so any follicles that were already near the final phase are going to fall out quickly and then followed up by others. Once a follicle is in the telogen phase there is no reversing it. Many people blame the drugs instead of realizing that this process started significantly before any treatment plan was put in place.
So what can be done? Nothing.
That was a blunt and disturbing sentence. The reality is, according to Dr. Chu, “until the underlaying problem is solved or managed…hair will not grow and will continue to fall out.” There is no magic cure, lotion, or shampoo that will help. If you follow your doctors advice, get the autoimmune disease in control, eat highly nutritious food, get away from harmful chemicals, and learn how to deal with stress in a more constructive way, your hair should eventually come back.
Dr. Thomas and I extended the conversation into his background and interests. When asked about his family he replied, “I come from a family of physicians and surgeons: my grandfather, father, uncle and cousin. I learned at a young age that medicine was not just a job or a career, but a way of life.” His parents are from Taiwan and met in a painting class while studying medicine at University of Texas. His father is a well-known cardiac surgeon having performed the first transplant, coronary artery bypass, and artificial heart transplant surgeries in Taiwan. He eventually became the CEO/President of the hospital and now in his 80’s runs the foundation.
His mother is a pathologist who made headlines after identifying a gene that makes people susceptible to infection by the SARS virus in 1990s. She is considered “The Mother of Blood Transfusions” and continues to run a pathology lab in Taiwan. Even with her busy schedule, she spends a month out of the year doing missionary work in Southeast Asia.
Her father was a general surgeon as well. Dr. Chu shared: “I am influenced by my grandfather, a general surgeon who practiced in a rural area. He managed anything that came through his clinic doors, and frequently took no payment from the local farmers who had a bad year. He was a man of few words who told me that to truly live, one has to enjoy one’s work while improving the lives of others.”
Dr. Chu not only gained a mind and heart for learning science, he also shares the interest in art that brought his parents together. Poetry instead of painting, is at the heart of this doctor. T.S. Elliot is one of his favorites and quoted him for me before I got back on my bike to head West: “We must not cease from exploration and the end of all our exploring will be to arrive where we began and to know the place for the first time.” T.S. Elliot
He introduced me to A Hero’s Journey; it is appropriate for anyone dealing with a disease (caretakers included.) There is a starting point of who you are, denial/acceptance, adventure/learning, and in the end there is a new you. The two ideas pull together if one is open to it. You never are not you…but this new experience/journey, brings you to certain point where you realize there is a new you. You are still you, but with a lot more information. Learning to be content with the reality that life is a journey – we should be changing, even if the changes are not what we planned on, and learning how to make those changes positive in our daily lives is what makes the difference between being a victim’s journey or a hero’s.
Personally, my hair was important to me as it is to most people…it was long and full. I grew up a natural blond and during the summer it was almost shinny yellow. It has come back; dark brown, thick, and curly! I’ve been cutting it short & coloring it pink because I haven’t yet accepted it. Maybe this winter I will allow it to just grow to see what the new natural me is. My hearts been on a journey through this disease…and so has my hair. Thanks to doctors like Dr. Thomas this journey hasn’t been alone.