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FFA -- newcomers dilemma
I think I used to be intelligent. But with so many discussions and so much personal research, I've been very slow to catch on to the whole business of naming this disease. Today at last I think I get it: [FFA] Frontal Fibrosing Alopecia IS "Scarring Alopecia". Or rather it's one of several somewhat similar diagnoses. CICATRICIAL Alopecia IS Scarring Alopecia. In fact, "cicatricial" means "scarring".
So what does this mean? I knew that FFA was far rarer than many other types, such as the too common Alopecia Areata [AA], and so I accepted [with frustration] that it wasn't even one of the multiple choices on our Profile pages. I had put "Other type of Alopecia". If you have done the same, please fix it. We FFAers then become identifiable as a group.
But what is significant about calling FFA a scarring alopecia? It separates us from the vast majority of alopecians who have AA, AT, or AU. In their case, it is always possible that some or all of their hair may grow back. Sadly, it is also possible that it may just fall out again. But with scarring alopecias, there is no return! Ever! That makes a difference in how we treat the loss.
According to the useful website of the Cicatricial Alopecia Research Foundation [CARF]: "all cicatricial alopecias involve inflammation directed at the upper part of the hair follicle where the stem cells and sebaceous gland (oil gland) are located. If the stem cells and sebaceous gland are destroyed, there is then no possibility for regeneration of the hair follicle, and permanent hair loss results."
Most of us, I believe, already acknowledge and struggle to accept that finality. If you have had a scalp plug biopsy resulting in a diagnosis of FFA, the inflammatory disorder will destroy the hair follicle, and replace it with scar tissue, beneath the visible scalp, causing permanent hair loss. The skin grows over the former hair follicle, leaving a rather shiny, smooth, totally bald area -- basically at the front of the hairline, along the forehead and into the temples.
I do not wish to put a damper on anyone's hopes. But I think it's easier on our psyche if we go ahead and recognize FFA for what it is, and acknowledge that some treatments may slow the progress of the hair loss. But nothing is [yet !] known to cure or reverse it.
So we prepare to deal with it, perhaps to tell our friends and family [especially so they don't think something worse is attacking our overall health], possibly to begin researching hairpieces and headcovers if we choose. There are also a number of prescriptive meds to treat the symptoms of itching and discomfort. And we hope that by reducing the inflammation that produces those symptoms, we may at least be slowing the progress of the disease.
I myself am a born optimist, and have almost always looked on the bright side of things. Sometimes the bright side is the simple truth. Personally, I feel a need to know the truth about my many health issues. And by facing them head on, I think I'm not inclined to be as overwhelmed and depressed.
So the Pollyanna in me gratefully says, wow, it could be so much worse! Now I can justify spending all my pin money on headbands and beautiful scarves. Retail therapy!
Replies to This Discussion
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Permalink Reply by Debs on
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Anne, FFA affects us all differently. Some ladies lose 2cm from the front hairline, others can lose up to 8cm so not everyone needs to change their hair style or wear headbands/scarves/wigs etc... A fringe (bangs) may be all that some ladies need.
I choose to wear wigs because I like to look groomed and my wigs look nicer than styling my own hair but FFA is not a drastic loss of hair for everyone with this diagnosis.
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Permalink Reply by Classical Anne in NC mountains on
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Yes, it's interesting how different the experience [and results] may be, from one patient to another. I did not intend to imply that it is a drastic loss, for anyone. Just that it is a permanent one. I feel fairly certain that I'm likely to lose a couple more cm before the disease burns itself out. I still have active inflammation and itching, and can pull individual hairs out, completely and painlessly, in various frontal areas. I think I look forward to finding a nice wig at some point -- it would make grooming so much easier! For now, though, I'm very happy with my pretty scarves, which I wear gathered as a 3 or 4" band across the top of my head, then tied at the nape with soft "tails" hanging over my shoulder. And for the first time in my life, I have soft, wispy bangs across my forehead. My hair was always too curly and stubbornly independent! But the texture has changed. Now I do the female version of a "comb over", brushing from the crown to bring a feminine fringe to my forehead. Always wondering, but no longer worrying, just how far the tide will ebb.
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Permalink Reply by Jinzy on
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Anne, I just did a random search and your post came up so I read it. I'm a newcomer and your outlook is very refreshing. I struggle with the scarring aspect of FFA, as well. Being permanent is scary, but I appreciate the truth rather than having false hope. I'm still researching as this is very new to me. Not sure how much hair is lost with FFA, if I'm through losing hair (fingers crossed!) or not. Just wanted to say thanks for your post! :)
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Thank you for your kind words, Jinzy. And welcome to the club you never meant to join! Truthfully, I think you'll find that this is a wonderful group of ladies, always ready to offer support and encouragement. It helps so much to know that others have already survived whatever you're going through. And it's a grand way to let off steam when the frustration threatens to spoil your day! Hope your journey is as peaceful and comfortable as possible. I suspect from your note that you're up to the challenge. And I see by your photo that you are beautiful and fun-loving! Perfect recipe for success in dealing with FFA and life.
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