Since May is Lupus Awareness Month, I thought it would be fitting to share the story of one of my hair loss sisters, Sharyn. She was kind enough to provide some information and her own experience with hair loss and lupus. Sharyn is one of the strongest people I have met – not only is she dealing with the tough experience of losing her hair, she’s also battling (and conquering!) life with lupus.
Lupus is one of the many medical conditions that includes hair loss as a symptom. This is why it’s very important to head to the doctor if you notice your hair is shedding. Read on to hear Sharyn’s story.
Three years ago, I noticed that I was not only losing a lot of hair in the shower, but that I was seeing more and more scalp through my thin, fine hair. Scared, I called a dermatologist to find out how to keep my hair on my head where it belonged. Most women undergoing HL seek out a dermatologist who looks at their scalp, orders a battery of blood tests, ultimately tells them they have genetic hair loss and give them a prescription for spironolactone and recommendations for minoxidil then send them on their way. I expected a similar experience.
The dermatologist was a nice woman who went through the different causes of hair loss in women with me, then explained what kind of lab tests she needed to run before we started any treatment. She seemed pretty confident I was suffering from androgenic alopecia (AGA) and that I would be back to see her soon for my prescription. Among the lab tests she ordered were hormone levels, vitamin and mineral levels to check for deficiencies, and something I had never heard of: the antinuclear antibody test.
About a week after the labs were drawn, I got a call from her nurse telling me that I needed to see a rheumatologist. My labs had come back and I was anemic and my ANA was extremely elevated. I didn’t even know what that meant. She threw out scary diseases like lupus and rheumatoid arthritis. Shaking, I got off the phone and called my husband while frantically searching the internet for what a positive ANA might mean. I learned that ANA are autoantibodies directed at the cell nucleus and are measured in titers with a reading of 1:40 considered a weak positive. With each dilution, that titer doubled (meaning one more dilution before no more ANA were detected would be 1:80; two more dilutions would be 1:160 and so on). Some healthy people with no autoimmunity whatsoever have a low positive ANA … so perhaps there was hope for me?
That afternoon, I picked up a copy of my labs from my dermatologist’s office. I quickly scanned for the section with ANA titer, and my heart dropped when I saw the reading: greater than or equal to 1:1280. At that high of a titer, there was something wrong with me. I was sick. If I had known what was in store for me, I’m not sure how I would have made it out of that parking lot.
A few weeks later, I was sitting in a rheumatologist’s office with my husband and a list of medical symptoms a page long – anything I could possibly think of had made it onto that list, things I had blown off as normal or just ignored for years. We ran more labs, including a full ANA panel, took x-rays, and he did a full evaluation. The full ANA panel includes looking for specific autoantibodies that can help doctors confirm a diagnosis – such as SS-A and SS-B antibodies, rheumatoid factor, and anti-dsDNA. Not long after that appointment, I got a phone call: I had Sjogren’s disease, an autoimmune disease that primarily attacks the moisture producing glands of the body. My rheumatologist recommended starting Plaquenil immediately for the joint pain and inflammation. But this disease didn’t seem to fit all of my symptoms, and for the next year, with each follow up with my rheumatologist, more and more diagnostic criteria were met for lupus, and I was eventually diagnosed with lupus as well. Systemic lupus erythematosus is a very serious autoimmune disease in which autoantibodies attack the healthy tissues of our own body. It can affect virtually any part of the body, most commonly the skin, kidneys, lungs, heart and central nervous system. It is a debilitating, and sometimes fatal, disease.
Plaquenil did help with the painful, swollen joints and skin rashes and it also helped slow down my hair loss About a year after my initial diagnosis, though, I had to stop taking all of my medications due to some side effects, and within a month, I had lost so much hair that I bought my first wig. I used a pair of clippers, buzzed my hair down to about a ¼” and haven’t looked back. I have been wearing wigs for two years now, and they have absolutely saved my sanity.
The thing about chronic illness and hair loss is that it puts hair loss in a different perspective. I would give up every last hair on my body to have my health back. Living with lupus and Sjogren’s is a daily struggle: it means trying to balance work and family life with a kind of unrelenting fatigue that only few can understand; it means learning, and very often re-learning, limitations so as not to set off a flare (increased disease activity); it means living with pain.
Hair loss is a common feature of lupus and many other autoimmune diseases, so I would encourage any woman experiencing hair loss to talk to her doctor about it. It may be an early warning sign that something much more serious is going on inside her body, and, generally, the earlier these diseases are diagnosed and treated, the better. Losing my hair may have been a blessing in disguise for me: I was diagnosed before major symptoms began and have managed to avoid serious organ involvement as a result. I will wear my wigs happily for that exchange!