Every year on May 20th, we shine a spotlight on International Clinical Trials Day. Clinical trials are an essential part of improving care for individuals with diseases and medical conditions. They are a vital part of developing new treatments for alopecia areata and can help someone take control over their condition.
Today, 34-year-old David Sanderson from Calgary, Alberta talks about his experience participating in a clinical trial over the past year. David was diagnosed with alopecia universalis in 2019, which left him grappling with the loss of his identity and self-confidence. With the guidance of his doctor, he went through a prescribed treatment course but was not seeing the results he wanted. That is when he began his research into clinical trials.
For more information about what clinical trials are and how to locate a trial near you, visit CANAAF’s Clinical Trials page.
How did your journey with alopecia areata start?
I realized something was wrong in July of 2019. At my sister’s wedding I found hairless patches in my eyebrow and on my scalp and from there it advanced quickly. In a matter of months, I was hairless, from July to December I lost every hair on my body. At first my Doctor thought I just had male pattern baldness and was obviously pulling my eyebrows out as a nervous tick, not the case at all.
I reached out to my dermatologist and went through all treatments available, starting with steroids and injections, up to 35 needles per visit which was excruciatingly painful and an onerous process. Then I did steroids and chemotherapy (methotrexate) to try and combat the hair loss as well – nothing worked. The injections slowed the hair loss and kept some of the hair, but as soon as I stopped them the hair fell out. I tried the autoimmune protocol diet which helped with other issues but not the hair.
(From left to right) David before his diagnosis of alopecia areata, after diagnosis of alopecia universalis, and David today.
As a man it is not uncommon to lose your hair, but in my family it is rare. What I have found the most frustrating is the downplaying and minimization from everyone one around me (except my husband, so lucky to have his support) telling me “it’s just hair, at least you don’t have cancer, at least you don’t have this, or that…..” meanwhile I was also battling burnout and other autoimmune issues. I felt abandoned by society. Because “it’s just hair” people don’t understand that you lose your sense of self, that your visual identity is destroyed, your self confidence is bashed, and you can no longer recognize yourself in the mirror. For the past few years I even stopped dreaming of myself with hair.
The staring and the comments and questions from strangers was exhausting. I work in banking and was dealing with clients every day while my hair was falling out so it looked like I was either going through chemo (which I was at one point with the methotrexate) or I had some other type of illness. People stared at the grocery store, Starbucks, the mall, at work. Complete strangers asked if I was dying, what kind of cancer it was, or how much time I had left. I stopped going out, changed to an at home role with no face-to-face work with clients, and became a hermit. Normally, I am a hugely outgoing and confident person who seeks out social events and in person activities, but alopecia took that away.
I can honestly say alopecia areata has been the single most challenging battle and process in my life. I have experienced a lot of trauma and loss, but it did not break me. I found my new self with the help of online support groups, found strength in the voices in the group who could actually identify with my pain and loss, and I rebuilt.
At what point did you decide that you were going to participate in a clinical trial and what was involved in the process?
It was after connecting with the CANAAF page and a local Alopecia page that I started digging into clinical trial research. I finally found the current trial I have been on since March 2021. I reached out by calling the two dermatologist clinics in Calgary whom were offering the treatment and booked into the first one available. I was interviewed, medically screened, and then approved.
What went through your mind when you found out you were approved for the clinical trial?
I cried on the spot when I found out I was accepted. It felt like a giant relief. This was extremely important to me, as I have found there are some strong voices whom speak negatively of clinical trials which I find not helpful. I believe in “each to their own” however, and making such negative statements about trials only steals hope from those whom are willing and need to explore that journey for themselves.
Did the clinical trial team properly prepare you for the experience?
They were amazing, helpful, and answered all my questions. I have a university background in biology and chemistry so I had researched the risks and the drug type. I have felt safe and cared for throughout the process.
Tell us what it’s like to receive the treatment. Did you experience side effects?
At first it was monthly, then moved to every two months. I take a pill in the morning and once at night. It has been painless, safe, and is a well monitored process. I have had a few side effects: a bit of weight gain (could also be the famous COVID 20 pounds) and have had some acne. Nothing came as a surprise and my health and test results have been stable the entire time.
Did you regrow hair as a result of the treatment?
I have 95% regrowth and should hit 100% in a few months with my eyebrows and eyelashes coming in last. I am still on the drug and will be for life. Being on this trial has given my self back to me.
What advice would you give to someone else interested in participating in a clinical trial?
Listen to your own voice and thoughts, talk to your doctor, and then go for the interview with the clinical trial group. Make your decision after you have all the information. Do not shut the door before you have the firsthand information and knowledge/comfort from the medical team whom will be supporting you through the journey. Clinical trials offer hope and we cannot find treatments that work without the brave souls to take the risk.
If you are interested in participating in a clinical trial, speak to your doctor/dermatologist to see if the decision is right for you. For a list of questions to ask your doctor, the study team, and yourself, visit www.canaaf.org/clinical-trials/questions-you-should-ask.
