Tell Your Story
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.
Half Empty or Half Full? In Hopes of Inspiring Resilience
By: Anonymous Patient (Fall 2007)
I've always considered myself an optimist. But I sure didn't feel the least bit cheerful on that day four years ago, when I held up a hand mirror to check out the rearview of a new haircut, only to discover a series of shiny snow-white, mangy-looking bald patches sweeping across the back of my head. I felt devastated.
As a freckled, green-eyed strawberry blonde susceptible to skin cancers and rashes, I had seen dermatologists routinely my entire life and during the previous six years had asked them to examine my scalp to see if the itching and crusty lesions I'd been experiencing were suspicious or malignant. Not a single doctor, even after several biopsies, had given me an accurate diagnosis. My panic and dismay were now mixed with anger and frustration that things had gotten out of control, even under the care of professionals. My glass seemed considerably closer to half empty.
Responding to my alarm and distress, my husband encouraged me to find a specialist and said we would "go to Switzerland" if necessary. We didn't have to go that far. After an Internet search, I discovered one of the world's foremost scalp specialists, Dr. Vera Price, nearby in San Francisco. Things were looking up! But I was still in for an emotional roller-coaster ride, particularly after learning that my hair loss was permanent and my disorder so rare that scientists have not yet discovered a cause, let alone a cure. More disheartening was the fact that some of the drugs being tried as first-line treatments produced mixed outcomes, and often came with serious side effects. I had to make some difficult decisions, weighing my desire to hang on to my hair with my fear of putting my body at risk.
So where was the silver lining in this cloud? Reflecting back today, I can actually count many blessings in the form of life lessons learned and things for which to be thankful. The best thing to come out of this process has been the deepening strength of my relationship with my husband, who routinely applies topical tacrolimus to my scalp, and in so doing we have maintained some control over the symptoms and rate of hair loss. While assuring me that he'd love me with or without hair, my husband's emotional support continues to help me cope, and he has also become a supporter of CARF in its mission to fund research and raise awareness and advocacy.
Other good things have come out of having this disorder. I have long subscribed to several health/medical/nutrition newsletters and have followed research on a wide range of health-related topics—from the study of chronic diseases of aging to the many ways science is discovering how diet and lifestyle can affect illness and wellness. In the course of learning about the cicatricial alopecias and other hair loss disorders, I have integrated theories and knowledge about these disease processes, such as autoimmunity, into my understanding of health issues in general.
In particular, I have become a proponent of an anti-inflammatory diet. Having already known that many diseases—including arthritis, heart disease and Alzheimer's—are thought to be inflammatory in nature, and then learning that the activity of cicatricial alopecia is likely also to be an inflammatory process, I have adopted a diet rich in anti- inflammatory nutrients and low in ingredients thought to contribute to inflammation. There's nothing like the motivation of not going bald to inspire a commitment to a diet that may slow the hair loss process! Rigorous adherence to my diet, along with dedication to regular exercise, has reduced much of my arthritic joint pain, made me slender, and may also be lowering my risk of developing some of the diseases that have afflicted my ancestors. Benefits indeed!
I have also gained more confidence in my ability to influence my health through exploring modalities that are complementary to Western medicine, including acupuncture and oriental and naturopathic medicine. I have learned how to have more productive clinical visits and more effective conversations with care providers, both for myself and on behalf of others. I am empowered knowing that my growing knowledge base will help me in the future to deal with other issues and illnesses that may arise in my family and am gratified at having become an ad hoc resource for information and support within my extended family and circle of friends.
Another look on the bright side concerns my hairstyle. I used to let my long hair flow, restraining it with a ponytail holder anytime I wanted it out of my face, which was most of the time. It was not the most becoming look for me, but it was utilitarian. Now, because of my need to train my hair to sweep back in order to cover the bald patches, I've been compelled to learn some styling skills, which, in my opinion, have resulted in a hairstyle that's more flattering to my face and functional as well. And I've strengthened my commitment to wearing hats and sunscreen as a result of using a medication that increases UV sensitivity. In the long run, my skin will look less aged.
And speaking of comb-overs, I have learned to be more compassionate in my attitude toward balding men whose attempts to reposition a few strands of hair across their hairless heads used to seem comical to me. I can now empathize with their desperation to cover their scalps, and I am more sensitive to anyone trying to minimize what they perceive to be personal imperfections of any kind.
Gaining a healthy perspective has also been an advantage of having this disorder. Although hair loss is horrid, it is not life-threatening. And I've found that staying busy with my work and my life, plus the passing of time, has helped me to place less importance on it too. I can honestly say that several days at a time can now pass without giving my scalp a second thought.
One of the most rewarding benefits that has resulted from having cicatricial alopecia has been my association with physicians and patients through the wonderful organization of CARF. The exchange of support, information and friendship among the patients I've met and gotten to know through CARF continues to be invaluable. CARF, through its two patient conferences and the 2005 Colloquium, has provided my husband and me opportunities to meet the world's leading dermatologists specializing in scalp disorders and to talk with them informally about their treatment approaches and their work. What a rare and valuable privilege this has been!
I look forward to seeing these folks and meeting new acquaintances at CARF's upcoming Diamond Affair fundraiser in Beverly Hills in July. My husband and I hope to see you there!
The Measure of Beauty
By: Sandra Dubose-GibsonI 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.
A Patient's Perspective
By: Anonymous (2006)
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!
An Interview With Betty Ruth Tanzey
By: Laurence Spector
About Betty Betty Ruth Tanzey is a former United States Naval officer who was stationed at Treasure Island Naval Base off the coast of San Francisco. She specialized in encrypted communications encoding and decoding secret messages for the United States Military. After retiring from the Navy, Betty worked as a court reporter in California and now resides in San Francisco.
Her cause: Empowering CARF to underwrite the research projects necessary to find a cure for cicatricial alopecia Betty learned about CARF on the Internet; however, she did not realize that her diagnosis of lichen planopilaris was a form of cicatricial alopecia until she checked with her physician. She thinks there are other patients who have this condition but don't know it because they have not seen a specialist who can make a proper diagnosis. She realized her hair was disappearing slowly and knew something had to be done. At this year's CARF patient conference in Minneapolis, Betty enjoyed meeting other patients with cicatricial alopecia but was frustrated at the lack of answers to many questions surrounding the mystery of the disease. Betty believes CARF is challenged with promoting awareness among doctors, patients, and research scientists. When asked if there was anything good about having cicatricial alopecia, Betty commented that, "I suppose if you have to be cursed with something, this is not as bad as many other things. And if patients unite, together we can find a cure by supporting CARF."
Why she gives to CARF "I want to help fund a cure. CARF is a great candidate for my charitable contributions because I know the money will be used for research. This is one of the main goals of CARF. I can only say to others that investing in CARF is in their own best interest. If anyone is going to find an answer, it's going to involve patients working together. This year, after attending CARF's patient conference to learn more about the disease, I left feeling determined to help find better treatments as well as a cure."
Profile in Giving: From Hope Lost to Hope Realized
By: Gwendolyn Powell Todd, EdD
As patients with hair loss, our hopes for recovery are often dashed at the time we receive a diagnosis of cicatricial alopecia. We walk into the doctor's office thinking that something can be done to remedy the hair loss and instead find that there is no known cause, no consistent treatment protocol, and no cure. After living with the disease, some of us realize that in order to move out of our despair, we must join the journey that will lead to answers.
Our first step is assisting CARF however we can (by donating and volunteering) because it is the only organization that supports relevant research and provides patient support and education on current treatment, research, and hair alternatives. Our second step often involves learning how to become an advocate for cicatricial alopecia. Advocacy includes introducing people to the concept of cicatricial alopecia, promoting CARF, and providing information to others about our disease.
I became an advocate when I went to the Annual Meeting of the American Academy of Dermatology (AAD), held in Washington D.C. in early February, 2007. More than 10,000 physicians and medical professionals were present. I was privileged to attend the conference with our CARF founders, Sheila Belkin and Dr. Vera Price. Our advocacy-focused activities included education, education, education. There were 11 hair loss sessions during the conference, a notable increase in interest and visibility for cicatricial alopecia. Several of CARF's highly respected scientific advisors were speakers. Dr. Price lectured on the diagnosis of approximately 100 physicians. The attendees were enthusiastic and asked many questions. I asked one physician who does not treat hair loss why he was attending Dr. Price's session. He replied, "Because she is world famous, don't you know?!" Our very own internationally renowned specialist educated people not only with lectures and personal conversations, but also with a video that was played at the entrance to the conference.
Networking: There were countless opportunities to meet people and discuss the latest information about CARF and cicatricial alopecia. We shared information when we attended receptions, luncheons, award ceremonies, or just walked to the conference with other attendees. We were able to learn how other organizations have grown by attending their gatherings. The Women's Dermatological Society (WDS) held both a reception and luncheon, the Coalition of Skin Diseases (CSD) held a luncheon meeting, and there were numerous other receptions.
CARF Goals: The goals of the organization are always on the minds of our co-founders. They held a meeting with our scientific advisors to discuss how to meet CARF objectives and to share treatment strategies. Drs. Lloyd King, Len Sperling, Paradi Mirmirani, Ken Washenik, Kurt Stenn, Jerry Shapiro, and Maria Hordinsky attended. A major goal of CARF was realized at the conference: expanding the list of physicians who treat hair loss. During the various lecture sessions, physicians who are willing to treat hair loss patients gave us their contact information. This is so important for the many patients who are seeking physician referrals. As a cicatricial alopecia patient, my hope was lost with the initial diagnosis but the more involved I have become with CARF activities, the more I believe that one day soon my hope for a cure will be realized!
Wish Me Luck
By: Dick Le Fort, Wellington, NZ
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!
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