The article below was originally published in the Winter 2010 edition of CARF Communiqué. Another version was later published in the Journal of Dermatology for Physician Assistants.
The Measure of Beauty
I never knew how attached I was to my hair until I began to lose it. I know that in the big scheme of things, if you have to get diagnosed with a rare disease, not having a life-threatening situation is the most important factor. At the time, at just 25 years of age, when all the hair on my body was falling out due to alopecia universalis, it felt like a life-threatening situation. What would I look like and how would others relate to me if I was forced to look different indefinitely? The threat was not on my life but on my self-esteem. In addition to having alopecia universalis, I was diagnosed with cicatricial alopecia. My dreams of having my hair grow back had been shattered. I had to find the path to serenity, the ability to accept the things I cannot change, and the courage to change the things that I could.
Looking back now, eleven years later, my attitude has changed. I am not the woman I used to be. I'm stronger, wiser and better. No one ever signs up to go through a lifechanging, traumatic experience. We live and learn that in life many things will be out of our control. Life happens to the rich and the poor, the black and the white, the old and the young. We each have personal challenges along our path that are designed to teach us and shape us into who we are meant to be if we stay present to the lesson. Whining and wondering, Why me?, is an effort in futility, because no one person deserves emotional pain over another, and yet we each will have our own unique share of it. Sometimes it seems that some have more than others, and some things we will just never understand.
Being challenged by unwanted changes in our self-image provides us with a unique opportunity to learn a deeper lesson about our identity. We pick apart what we thought made us who we are and get to the root (no pun intended) of our true identity. We are forced to learn this lesson if we are going to survive. Dare we believe that our greatness and beauty exists in our external attributes alone? We can no longer allow hair to define
us, or our weight, or our skin, or even our limbs if those are taken away.
At some point, we have to find a way to turn it around and make it a positive. If you dig deeper, you can stand taller than you ever knew you could and find a way to give back, even when you feel you have nothing to give. There is always someone in need of a kind word of encouragement. You will find that the true way to measure your own beauty is by the smiles you put on the faces of others.
Do you have a story to share about your journey with cicatricial alopecia? Each person’s experience is unique and we would love to hear your personal feelings about how you have come to terms with your diagnosis and living with cicatricial alopecia. If we all share, we give hope to others and everyone will benefit. Please email your story to firstname.lastname@example.org.
Click on the links below to download inspirational stories first published in CARF newsletters.
Half Empty or Half Full?
In Hopes of Inspiring Resilience
By Nancy Gates
An Interview With Betty Ruth Tanzey
By Laurence Spector
Profile in Giving: From Hope Lost to Hope Realized
By Gwendolyn Powell Todd, EdD
Many people can identify with the following experience with alopecia areata.
Wish Me Luck by Dick Le Fort Wellington, New Zealand
I was ten years old when someone discovered that I had a small bald patch on the back of my head. The recent change of schools had been traumatic for me, but as a little fellow I didn’t realize that this was a form of alopecia, a disease which was going to accompany me for the rest of my life. No one really knew very much about premature hair loss back in the fifties.
I remember my father doing the rounds of local hairdressers with me to find someone who would be brave enough to cut my hair. Finally, one took on the task but charged extra because he said that he would have to wash the contaminated equipment. Naturally enough, my haircuts were few and far between, which meant it grew longer than most other boys and so covered the dreaded bare patch. My father spent hours massaging olive oil into my scalp in the hope that new hair would grow. After about six months, the hair did return, but I doubted that it had anything to do with my father’s ministrations. Years passed and I led a normal healthy life.
In my thirties, I found myself booked for hernia surgery. No big deal, but the mere thought of it broke me out in a cold sweat. Surgical instruments cutting into my body was more than my mind could cope with. The very next day after the operation, I woke to find my wife waiting by my hospital bed. She commented that a lot of hair had fallen out on my pillow.
In later years, I realised that this had been a similar occurrence to what had happened to traumatised pilots during the second world war when some of them lost their entire hair after flying a sortie. Thankfully, my hair eventually grew back and life continued. During the following years, I experienced further hair loss. The incidences increased with each year; and to my annoyance, my hair was going prematurely white. Like many other sufferers, I spent a small fortune on cortisone injections, lotions, magical potions and almost anything I thought might help me. Of course working in the music industry was handy: it meant that I could mostly hide my affliction by wearing my remaining hair longer. This made me look quite artistic, and as long as the wind wasn’t blowing, my secret was safe. Medical people were much more knowledgeable about the mysteries of alopecia by this time and offered me valuable gems like, ‘the more you stress over it, the worse it will get’.
For the next ten years, my condition didn’t get better, but it didn’t get worse. In my forties, my marriage of twenty five years ended. Very shortly after, and not surprisingly, I lost a considerable amount of hair together with a lot of self esteem. It came as a very welcome revelation that after six months, recovery was well underway. Not only did my hair grow back completely, but most of it on top was black (surprisingly because my original colour had been red!).
A year later, having just recovered from my marriage breakup, a second whammy came - I lost my full-time employment of thirty years and was now on my own. This, in seismic terms, was ‘the big one’. I lost most of my hair and eventually went into totalis -- well almost -- as I did retain my mustache and a little tuft on each side of my head behind my ears. These little tufts were symmetrically placed. Some people told me to shave them off, look trendy, relax. But I told them that the stupid looking tufts would stay as a reminder to my scalp of how the rest of it should look. Acupuncture and witch craft were about the only things I hadn’t tried. I thought I’d start with acupuncture, which by then was a more respected and understood profession. After two weeks of treatment, and with the help of a magnifying glass, I noticed some very fine new growth. After the treatment stopped, the re-growth stopped.
Fundamentally, I figured that under certain circumstances, my hair would indeed grow. So why did it fall out again? Without consulting anyone, I eventually came to the conclusion that it must have been a psychological issue. I started reading books on the ‘power of the mind’ and adopted some of the recommendations such as reciting positive daily mantras to myself. By then, I had found a new partner to share my life -- Frances, a very positive person, who was very loving and very understanding. In the evening, when we settled down to watch some television, she would sit alongside of me and softly stroke the back of my head. Prior to that, I had dreaded the thought of anyone seeing my bald patches let alone touching them. Months later, the first re-growth appeared at the back of my head.
To this very day, I am happy with where I am. I have accepted the condition that I know will always be with me. On the positive side, although this last reappearance of my hair left me with a male-pattern baldness, it doesn’t single me out from many others. Fortunately, at sixty five, they tell me that my hair is supposed to be ‘silver’. Any remaining small patches are hidden and practically forgotten about. Either way, I don’t get over concerned anymore. Well that’s my story. I hope that some of you out there can take something from it and I wish everyone the best with their own personal journey. I recently read about a young girl in Australia who went into totalis but who completely recovered after taking a ‘women’s supplement’. Of course I’m now giving that a go and it’s currently showing signs of improving my male pattern baldness. Wish me luck!
I've been lucky enough to attend both the first and second CARF conferences, the first time in San Francisco as an organizer and breakout session facilitator, the second in Minneapolis, primarily as a participant. I can't say enough positive things about the conferences, both in terms of my personal experiences and what I observed and heard from other participants.
I was first diagnosed with cicatricial alopecia over a decade ago. Like most of my fellow patient attendees, before my involvement with CARF I'd never known of anyone else who has it. While I have supportive friends and family, no one else could relate to the physical symptoms I was experiencing, my uncertainty as to appropriate treatments and my embarrassment over some of the messier ones, the challenge of finding a physician who could help me, and the emotions associated with my hair loss. For someone who'd had Shirley Temple curls as a child and had been affectionately nicknamed "Moptop" for several decades of her life, having "hair on fire" symptoms, losing some auburn curls, and facing the situation as a new, mid-life divorcee was a challenge!
My life changed for the better when I saw Dr. Vera Price at UCSF for the first time. The treatments began to slow down my symptoms for the first time in years. She asked me to join one of her patients, Sheila Belkin, and a small group of others who were working to create a patient support, advocacy, and fundraising organization: CARF. They had created a brochure and were working on a website. Would I be interested in coming to a meeting?
Not knowing anyone else with hair loss like mine, I must admit to being interested… and nervous. At the first organizing session, an afternoon meeting followed by dinner at Dr. Price's home, I joined a team of inspiring, caring, dedicated and capable people. Our leader, dynamo Sheila Belkin, planted the seeds for an inaugural patient conference and insisted that it occur within a year—a daunting task!
Collectively, we put our faith in one another and, via phone calls, emails and just a few face-to-face meetings, we pulled it off! The inaugural conference in San Francisco was so successful that some of the medical doctors in attendance from Minnesota asked for our planning template and materials so that they could take the initiative, work with local volunteers in Minneapolis, and conduct a second conference—less than one year later!
Seven of the organizers from the first conference were on hand in Minnesota to lend their support and share the experience with a new group of patients and physicians. We had a second resounding success!
Many of the conference participants were newly diagnosed with scarring alopecia and were receiving detailed information about the condition and treatments for the first time. Virtually all of us were hearing about pioneering research for the very first time. Several at each conference attended with their spouses or other family members, who were able to better understand the condition and related emotions, seeing that their loved ones were not alone or unusual in their responses to scarring hair loss. Having a disease that sometimes feels like "hair on fire," with no known cause and no known cure, can be challenging; yet, I now feel I have access to the most up-to-date research information. I have met physicians who are committed to collaborating with one another and to helping patients like me.
The CARF conference breakout sessions provided us with information and an opportunity to express frustration, uncertainty, concern, sadness… and resolve and hope. We shared our experiences and ideas and often unexpected humor and laughter, bonding while sharing meals, checking out hairpieces, and bidding on silent auction items to raise funds for cicatricial alopecia research.
Attending CARF conferences helps me to be proactive in dealing with this disease, by getting information from "the best," by thanking physicians who spend their time treating and supporting scarring alopecia patients, by sharing my experiences and perspective with physicians, by providing support for and receiving understanding and nurture from other patients, and by helping to raise funds.
I think of CARF and my experiences in Minnesota every time I wear my beautiful pearl necklace, just as I think of San Francisco when I look at the watercolor painting that hangs in my home, both won at CARF silent auctions! And I look forward to attending the next CARF patient conference and to meeting some of you there!
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