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Acquired progressive kinking of the hair (APKH syndrome) - anybody who knows much about this?
Hey, I'm 19, female, and though I haven't received an official diagnosis I am pretty positive I have the above mentioned syndrome.
It started as a patch of extremely dry, frizzy, curly and dark hair on my frontal/parietal scalp, when I was around 14 and it only developed after I moved to a tropical country from a dry, seasonal one. And then, a couple of months later I moved back to my original country and my hair completely returned to normal.
Now I moved back to this tropical country and the same thing is happening again, except this time the patch is much larger, and I find these kinky pubic like hairs almost all over my entire scalp, though still mostly concentrated on the top of my head. They're so thick and dark (I have fine medium brown hair) and bend at such odd angles. Another thing is the hair loss -- I have really bad hair loss, and I don't really know when this started. But now it's at the point where if I put my hair into a ponytail you can easily see areas of my scalp, especially "radiating" out from my part - which also got a lot wider. Also, my hair turned curly when it was almost perfectly straight before - but they're mostly soft curls, unlike the kinks in my "pubic" scalp hairs.
The thing is - I went back home for holidays last summer and this time my hair did not go back to its normal state, it remained kinky - though the hair shedding definitely decreased.
One more point is that the area of my scalp with most of the kinky hairs tends to get really sore every now and then for no apparent reason.
When googling it I found this syndrome which sounds identical to what's happening to me in every way - patches of kinky hair, hair loss, onset at adolescence - except most of the patients were males who have had a strong family history of AGA. (I have no history of AGA btw, and my dad at 50 has thicker hair than me). In those patients the syndrome eventually progressed to severe AGA that did not respond to treatment. I haven't managed to find much information on female patients - only that in the very few females who developed this, it didn't cause hair loss and spontaneously reversed itself.
Can anybody, especially females, relate to this? If so, can you tell me its association with hair loss in your case?
Thanks x
Replies to This Discussion
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Permalink Reply by Gabriela on
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Hi, I know this is old but I want to know if you found a solution or what did you do about it? I'm 17 female, and I'm experiencing the same problem as you since I was 15, dermatologists don't know about it and I couldn't find important information in Internet, so I don't know what to do, is affecting me physicological and physically, I really hope that you answer to me, I'm soo tired and six about this
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Well I would recommend to consult with a hair specialist having years of experiences in treating hair loss cases.
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