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Comment by mc on January 10, 2018 at 10:52am

Hello 

I am involved with a study at Mass General Hospital and this week undergoing patch testing to see if I react to the many chemicals in sunscreens and other products used regularly.  

I have been wearing sunscreen on my face for over 20 years and wonder as I assume they are at Mass General Hospital, whether these chemicals have something to do with my FFA diagnosis.

I have since switched to mineral sunscreen but cannot tell if FFA has stopped.  They told me they are doing this testing at Brigham and Women's Hospital also.  

I'm driving myself crazy trying to pinpoint when this all started for me.  I look at old photos, it's been over 8 years now.  So depressing!!!

Comment by ammie on January 10, 2018 at 10:19am

Yash, it is a devasting diagnosis. Some days I look at my hairline and just can't believe it is happening. I find myself admiring other people's hairlines now which would have seemed odd to me years ago. I was diagnosed when I was 38 and am now 42. I started noticing thinning when I was around 36 but it took awhile to get the right diagnosis. I see a specialist at Duke University every six months. I take Finasteride and Plaquenil. I have not experienced any side effects. I see a retina specialist once a year. He doesn't seem too concerned about my taking Plaquenil. I have blood work done every few months. My hair loss has stopped. It hasn't grown back but I haven't lost any more hair. I can still cover it up with bangs. I try to stay positive most days though I have my moments. I think we all do.  

Comment by Minter on January 10, 2018 at 8:50am

Yash My mother has lost most of her hair also from Lupus, I think it is Lupus of the skin- she was around 70 though when it started with her and that was about 5 years ago. I am fairly certain she also has FFA, as she has all the FFA symptoms too.  There aren't too many of us that FFA/hairloss has occurred from mother to daughter, yay for us being so unique, sigh. ;-/

I tried medication when I was first diagnosed the summer before last, but pretty much gave up on doing anything medication wise, I did try the steroid injections for about 4-5 months every month, but gave up on those as yes, they hurt, a lot! and I was told by the doctor that they could end up making "dents' in my scalp, yeah, no thank you!

I am able to take care of any itching skin irritation with essential oils/tea tree oil and my new discovery thanks to illustrated8r of castor oil and try and eat a healthy diet and just take care of myself.  I am of the thought that this will take its course either slowly or fast until it burns itself out no matter what I do so why add all these heavy duty prescription drugs to my body.  That is just me though, other people have gone the medication route and are pleased with the results. I am also over 50 and you are a young lady, so you need to do what feels right for you.  

I do color my hair- it is a light strawberry blonde naturally and I get the roots colored darker, almost a dark brown as it keeps the hair looking as "translucent" like when it is colored lighter at the roots- then I use a bit of dark powder to touch up on the sides in front of my ears and lightly on my part and then I use "boost n blend" root powder on the part line on the top of my head and so far its working- also dry shampoo and velcro and or hot rollers are great for volume, sometimes it feels like all smoke and mirrors but its working for now and if/when it gets worse I'll take it from there.  

We are all here for you to come and vent or ask questions or whatever whenever you want to Yash, this group is a life saver for me!

Comment by Minter on January 10, 2018 at 8:37am

Liz L,  I loved the way my LE system looked- I walked out of there feeling like a million bucks!  My system was basically like a small hair band for my sides and bangs as the top of my head wasn't that bad so I didn't need the full system, it is also less expensive then having the whole system done.  The sides had to be taped down and the the back of the sides and bangs were attached, the front of the sides were like flaps that had to be taped and the few stray hairs I had were shaved for where the tape went.  I was very pleased with how natural it looked, it did not look "wig-like" at all.

I had long bangs, past my nose when I went in and they of course were trimmed to match the system so when people saw me after I just said I got my hair/bangs cut.  The color matched perfectly- in fact the staff went above and beyond to make sure I looked and felt 100% when I was done!  I would absolutely recommend it if that was the way you wanted to go- you have to go in every 6-8 weeks for it to be adjusted and you do have to keep in mind that you need to give yourself more time to care for your own hair and the system.  But the problem was for me, I couldn't take having something on my head All The Time that I could not remove- I don't know, maybe I am claustrophobic or something, but it got to the point that even though I looked great, well my hair looked great haha- I could not take having the system on my head anymore and was ready to just cut it off myself if I had to, that is when I knew it had to come off.  I am adjusting back to my "own hair" again and sometimes miss my full head of hair.  

Comment by Yash on January 10, 2018 at 5:36am

Thanks for your posts LVL and Afraid. Greatly appreciate it and I don't  feel so alone. My mum lost her hair in her mid 30's but I never thought it would happen to me. Hers was from lupus. 

I hate looking at myself in the mirror but at this stage I still have hair that I can cover but its not the same. My hair looks dead and I can't style it. I don't even go to the hairdresser anymore. Does anyone still get their hair dyed. Is it worth dying it lighter so its less obvious or does it make the condition worse?

If there is no cure, is it worth taking the drugs and steroids as the dermotogists claim. My mum just says live with it and do not take further risks with your body. I'm scared as I do not want to damage my eyes (LVL - my dermo told me to get them tested too), liver and kidneys. 

For those who have been on treatment for a while, is it worth it? Has it made a difference? Has anyone tried alternative treatments? I had the injections done and my head is still hurting two days on

Comment by Claire Julia on January 10, 2018 at 4:31am

I have had the interlace system now for a year. At first I hated it and found washing etc difficult. But I have persevered and now feel quite at home with it. People tell me I look good but that could be because I'm now semi retired and taking the time to exercise more.

i have given up totally with doctors and medication and can honestly say I feel better for it. My skin still itches like mad at times but I keep it well moisturised. I would definitely say if you can afford it the system is worth investing in. I also feel so much better when I've been to LE as I realise other people have far worse to deal with than me.

Comment by Helen M on January 10, 2018 at 3:35am

Hi Jules - fortunately I don't have any scalp tenderness. I did have a wee bit of light redness as my hairline tracked backwards. Sometimes I get the odd shaving rash but that tends to be when I need to replace the blades. Nothing has so far prevented me from wearing the wig. I wash and condition it in the basin, comb it through and leave to dry on a towel overnight. One morning I put it on and washed it in the shower but it was more of a hassle so didn't bother again - you still need to wash and shave your scalp. You don't sleep with it on. I have a selection of knitted beanies to wear in bed during winter - my partner couldn't care less what I look like as long as I am happy and healthy. Cheers Helen

Comment by Liz Lov on January 10, 2018 at 3:34am

Reading a post from @Minter about the Lucinda Ellery system, curious about why you feel it didn't work for you? I met with them last week, it looked like an effective system although I don't think for me because of the relatively high maintenance. Would be interested in your thoughts?

Comment by Helen M on January 10, 2018 at 3:14am

Hi Airam - yes I shave my entire head. I am quite quick at it now and so far haven't cut myself!! I use a good quality 'mans' multi blade shaver - just one I bought at the supermarket. It was a big decision to shave it all off but I don't regret it for one moment. The only challenges so far are when you have an itch on your scalp you can't scratch it so I just press down on the spot with a finger and that works, and on hot humid days it can feel a bit like you have a wee pool of sweat under the cap, but it isn't that bad and it still stays firmly attached. Cheers Helen

Comment by Afraid on January 10, 2018 at 2:13am

Thanks for your post Helen, inspiring & you look amazing. 

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