Alopecia World
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New and really scared
Hi,
In July 2020 I noticed two patches of lost hair above both temples, one larger than the other. I assumed this was related to my eczema so I made a non-urgent appointment with my dermatologist and sorta brushed it off. My appointment was this week (now September 2020) and he confirmed it was not related to my eczema and it is actually Alopecia Areata. He prescribed a topical and a follow-up in 2 months.
Since my appointment, I checked my whole scalp and I think I see a spot on the nape of my neck, but i am also not sure if this is just how my hairline is. Something tells me I'm in denial, though, and it actually is another spot.
I have a panic disorder and anxiety so a diagnosis where things might suddenly get worse at any time has really lowered my quality of life over the last few days. I find i'm regressing in my progress coping with anxiety and now I am consumed with fear that I am going to lose all my hair suddenly. The lack of control is driving me wild.
I hate that I'm telling a forum of beautiful people that my fear of losing hair is consuming me. Because everyone here is just gorgeous with or without hair and I know it might be insulting to some that I still am stuck in my fear of losing hair too. I know it's something I need to get over and I would be lucky to be even a fraction as confident as so many people on here, but it's still so new.
I guess my question is - as someone who is in such early stages and so new to this, how do people cope with the idea they they may (or may not) have even worse hair loss? My hair is such a core part of who i am, i've worn it long for as long as I can remember and it's what people notice most about me. My social anxiety kicks in high when i imagine people's comments if I were to lose it all one day.
Replies to This Discussion
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Permalink Reply by Alo-mom on
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As the mother of a daughter that lost all their hair to Alopecia, she too had the most beautiful thick hair ever. 10 years later my heart still aches but she came to grips with the loss due to the support system she had around her. First, you need to find that support group. It can be friends, co workers or family, not necessarily in that order. There is the National Alopecia Areata Organization that provides information that is helpful and keeps you up to date on research being done for this condition. There are also phone support people that are there to provide help and guidance. It is ok to be fearful because that causes us to move forward on how to deal with what may or may not happen. My idea is to hope for the best and be prepared if you need to wear a topper or a wig. Learn all you can about types of hair, companies that are reputable and styles that most like your own hair. This condition was new to all of us at one point and it takes a lot of energy and inner confidence to barrel through it, but you will. Feel free to friend me and if I can offer any assistance I will. I am a phone support volunteer for the National Alopecia Organization or you might want to find a support group in you area.
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Permalink Reply by Sher on
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I understand your fear. I was diagnosed this month with FFA – frontal fibrosing alopecia. Right before Covid hit I noticed hair loss at my right temple. Part of that I notice a different feel of my skin along my hairline but didn’t realize it was so smooth because I had already lost hair – how did I not notice? My first dermatology appointment was rescheduled when clinics closed. Then that rescheduled appointment was canceled and nine months later I finally saw my dermatologist who confirmed the diagnosis. I had lost hair at my left temple. Hair across my forehead was gone and sometimes I notice one or two tiny dots of red. I have blonde hair and my eyebrows have always been light. I had noticed I was losing some hair at the outer edge of my eyebrows and someone told me it’s because I am hypothyroid and sometimes that happens. I just never really thought about it. Probably, having blonde hair disguised the loss for a while. Now my brows are pretty sparse and I’m noticing some lash loss. Some of the lashes seem to be growing in opposite or odd directions. I go back to see my doctor on December 29 and I’ve been using the steroid cream along my hairline and an on my eyebrows 2x/day. i’m beside myself about my eyelashes. I can wear a wig, I can tattoo are pencil and eyebrows but what about my eyelashes?! They are already so short naturally that I couldn’t imagine wearing fake lashes but once they’re gone, what do you do? Someone said she knows of a person who tattooed eyeliner. Does that accentuate the lash loss? I spent a couple days being tearful but it’s not my nature to hang on and continue to grieve but to make a plan. I look at all of the beautiful photos on this site and wish that I had the confidence and the looks not to it worry about how I’ll look or what someone would say. I just know me, I won’t be comfortable with a receding hairline. At least I don’t think so while I’m still in disbelief. I wish you well. I’m sure I will learn so much from all of you on the site. I’m currently trying to decide if I should fill the Doxycycline prescription. I’m really concerned about taking an anabiotic over long-term. Like I said, I’m using a steroid along my front hairline and temples and annoying and on my eyebrows. Has anyone also use Doxy and did you notice if it helped slow down or stop progression of FFA? Did you have a lot of stomach issues? I can take a probiotic to help someone. Within the same two weeks I was also diagnosed with celiac disease so I just want to be mindful of what I’m doing. In don’t want to add something that will upset my stomach. Any advice of similar stories and what worked for you? Thank you!
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Permalink Reply by outforawalk on
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Since your alopecia is recent and partial, there are treatments you can get. For a while, the dermatologist gave me shots in my scalp that made all my hair grow back. The first time I ever had the shots, I remember that I left the office with my scalp tingling and soon after, I went on a vacation from work and on my vacation, my hair grew back as if it had never been gone. I remember looking in the mirror at a full head of hair.
I also remember that there is a list of remedies you can use. They are available in the health food store but I don't remember what's on the list. You still have a chance for remission so please keep us updated.
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Hi. Don't worry, you'll be fine. I had a similar case with a project. Things are about to change for the better.
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Permalink Reply by Cjruelas on
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I’m not going to BS you, in my personal experience I’m devastated to this day. I loved my hair too, and my beard, eyelashes, eyebrows, everything. I lost it all in a span of 2 years. And it breaks my heart because my 4 year old son ask me “ why did you cut your hair like that “ and my gut tightens while I hold back the tears and tell him” I didn’t cut it buddy it just fell off” than I say “ you don’t like it? “ he goes “ no” and my eyes water. I hope he doesn’t get it. I’ve recently gotta two gorgeous head tattoos to try and revive some lost confidence, and it worked for a while. I stopped wearing hats and showed off my beautiful but slowly the hats came back. I’m slowly accepting that I will be forever bald, I feel treatments are temporary if not a waste of time IMO.
the process of self love is exactly that, a process. You can email me for any information if you likeChris.ruelas@hotmail.com
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