Replies to This Discussion

Permalink Reply by Anne Louise on June 13, 2015 at 11:49am

Hi there,

Sorry about your diagnosis, but you have found a good resource here.  The women here share their knowledge and experience in a very supportive way. For me, the first six months was the most difficult.  I spent too much time looking at pictures of women with severe hairline loss and worrying about how I would manage life with young children and wigs.  I lost all my eyebrows first, starting when I was 45, gradually noticed the hair on my arms disappearing, and now my legs are pretty much bare.  My hairline loss is about 3/4 inch, but only noticeable to me.

I think one of the challenges of this disease is not knowing what your rate of hairloss will be.  It seems to be different for everyone.  Some ladies here have noticed the loss increases during stressful times. I occasionally have some mild redness at my hairline, but it has never been itchy.  I remember wishing I could just get all the hairloss overwith and then know what I'm dealing with.  Now I'm grateful for the hair I have and continue to hope that I'm one of the mild cases.  Will I need a wig 3 years from now when I reach 50?  I don't know.  It is a good lesson in living in the present moment and treasuring what you have.

I was single for a long time, got married at 37; it was worth wating for the right man.  If you find yourself dating a man who freaks out at the thought of you with no hairline, then he is not worth staying with!  Consider it a good tool to weed out the losers. ;-)

Permalink Reply by Mel on June 13, 2015 at 12:26pm

So sorry you have been diagnosed with this, and so young, sadandunsure. I think Anne is right. The hard part in the beginning is not knowing if it will be a half-inch or 5 inches. I am also curious about whether there's a normal "rate" of hair loss, or "signs" of how much you'll lose. There may not be. I am 50, but honestly do look much younger and I am STILL single so that, I believe, is the biggest stressor for me, too. It's fine if I met someone right now. But my biggest worry is if I lost a lot of hair it would greatly affect quality of life, and make it more difficult, I feel like, to meet someone. If I was married and this happened, I think I would worry only about quality of life, but I'd have someone there with me to roll through life's challenges with, and would expect he'd love me no less with less hair. But, like you, that part is scary and makes me feel very alone and sad about that possibility. It's hard enough at this age!!
I was diagnosed in April, but noticed redness at my hairline over a year ago. Might have lost 1/2-inch. It would be OK if it's stops now. Tried the foam first time last night and it does look calmer this morning. But morning seems better than evening. I think rest is important. And I've been on the AIP diet for 5 weeks. I have NO idea if that will make any differene, but it doesn't hurt to try. I wish you all the best. ...I was crying a lot in the first few weeks. Now I try to choose to believe I am a mild case and be grateful for the stage I am in -- with enough hair to go out into the world feeling like my normal self.

Permalink Reply by star on June 13, 2015 at 1:02pm

Sorry to hear your news....i`m 38 and got diagnosed a over a year ago now.

I have good days and bad days about it.I have no itchyness or redness luckily.I used to have a middle parting but have to wear it on the side now.I`m not sure how much i`ve lost at the front, luckily i did`nt have a high hairline to start with.I`ve plucked out all the annoying little hairs you get left with at the front, and i seem to be losing more hair over the top of my head?

I use hair fibres which you can buy in diffrent colours which makes your hair look thicker, and sometimes use a scalpcolour cream also.

No-one would know i`m sure, but it still sucks i know.

I`m looking into getting my scalp tatooed with the micropigmentation method, to disguise the bits where you can see my scalp.

Try not to worry about how bad it might or might not get? And try to keep feeling sexy, your only young once!!

Permalink Reply by ammie on June 15, 2015 at 3:52pm

Welcome to the group and sorry to hear the news. I was diagnosis by biopsy just a few weeks ago and I am 39 years old. My hair loss has been slow so far. I estimate it started when I was 36 and since then I have lost about a centimeter in spots. My hair loss is patchy and I am just now starting to see the "band" across the front line that is associated with this disease.

You don't notice my hair loss unless I point it out. Luckily, I had a low hairline so that has been helpful but my widow's peak is gone and my sideburns are disappearing. My mother has it too and she lost all of her eyebrows. I still have my brows. 

My dermatologist told me it is not genetic but I have read that it can run in families. I guess some people are just more susceptible to it?

I have never experienced any redness or itching. My biopsy described the inflammation I have under the scalp as moderate so I wonder if that is related to the progression? There are so many unknowns. I had a baby 18 months ago so in my case it is not related to pre-menopause. About three years ago, I had breast surgery to remove a low-grade malignant tumor. I noticed more hair loss after that. 

What I hate most is how unpredictable this disease is. No one can tell you how much hair you will lose or how fast. I have my days where I just want to get it over with it, shave my head and buy a wig and other more hopeful days when I try to put faith into the treatments. I plan to hold on the hair I have for as long as I can. 

I was prescribed Plaquenil which I take twice a day and clobetasol propionate which I use once a day. I started using Rogaine on my own for about five months and I can see a few hairs growing in some of my bald patches. It's not a lot but enough to give me hope that I caught those hair before the scalp was scarred. 

You are right. It is a lot to deal with especially as a young woman. Hang in there. We will get through this together. 

Permalink Reply by Classical Anne in NC mountains on June 18, 2015 at 6:02pm

Dear sadandunsure, you have heard from some very thoughtful women.  This site is a great comfort to many of us.  I do greatly empathize with your sadness and uncertainty at such a young age.  I am not young, and I am not single.  In fact, I have not been single since I was 21, and tomorrow is our 44th anniversary -- I'm sure you can do the math.  But though I have a wonderfully loving and understanding husband, and have already dealt with a myriad of other medical issues, I too was nearly devastated at this dreadful diagnosis a couple years ago.  I am not a vain person.  I'm sure most of us are not.  Yet this particular disease hit extra hard simply because it's on the surface, not hidden like my other issues.  It's fearing how visible it might become that sometimes scares the poop out of me [you can translate to adult language].  

It's perfectly natural to feel frightened and hurt by this diagnosis. . . at any age.  I suppose there's a good as well as a bad difference between you and me.  I am sad for you that you may deal with it so much longer than I will.  But the good is that some means of stopping it, and one day reversing the hairloss, will surely come along in your lifetime.  The world of medicine is not all miracles, but such amazing progress is made day after day.

Like everyone else here, I cried and stressed over it for several months.  Even I am amazed at how much less it concerns me now.  Like others, I lost my eyebrows first.  Then discovered red, itchy follicles along my hairline and sought a diagnosis.  Because of all my other maintenance prescriptions, I chose not to treat it with any internal medicine.  Instead, I have treated only with the scalp injections.  Perhaps because I always had a low forehead, it has been barely visible even to my family until recently.  Whether it's due to the injections, or just the nature of the beast, I felt my progression with the disease was milder than many others on this site.  It would ramp up a little now and then, finding more orphan hairs on my comb/brush for a few weeks, but overall my hairloss has been manageable.  Actually, it's still not too difficult to disguise, if I keep a good haircut.  But I spent the first year of my diagnosis, and more than my fair share of clothing budget, on scarves and headbands.  It gave me something else to focus on, and made me smile to admire my collection.  Then about 6 months ago, I started wearing a short wig to church and various meetings [I'm retired].  You wouldn't believe the compliments I got!  Almost made me wonder, did I look that bad before?  

My rate of receding has increased again, and I have no idea when or where it will stop.  So I can't give you any answers on that score.  I would agree with you, though, that it is simply underdiagnosed in the black community.  But the most important thing I CAN say to you, is that it truly does get easier to accept and deal with in time.  And in the meantime, you will find much comfort and support from the compassionate women on this forum.  We are one in spirit.

I wish you all the best in dealing with this,

Anne