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Comment by Afraid on January 10, 2018 at 2:09am

Hi Yash

i was diagnosed in September (aged 50) I’m not post menopause.  I am an older mother and also had ivf in my early forties....I have often wondered whether this has contributed to FFA/LPP & Lichen Planus.  I have also experience skin allergies for my whole life. For example, prickly heat, reactions to some antibiotics, react badly to insect bites etc.    Like many others I have also experienced sustained stressful periods of time in my life through significant bereavements etc etc.  I constantly try to make sense of this whole devastating condition.  My scalp is sore and itchy, my whole body can feel itchy.  At first I thought I wouldn’t take any medication (having never taken any regular medication other than for ivf!) then I thought I had to give something a try.  I apply dermovate 1x day on my scalp & I’m 5 weeks into hydroxychloroquine.  No side effects until a few days ago when I developed itchy rash on my chin & yesterday lumpy rash on my arms and cheeks (perhaps the Lichen Planus or a reaction to the medication who knows?).   From what I’ve read on internet 30 % chance of positive outcome with this medication (45% with finisteride). However, when I asked dermatologist she said there were no figures or statistics re success rates?? 

I’m exploring options re wigs as want to be prepared and there is not a chance that I would present without hair.  The uncertainty and permanence of this condition are hard to accept and I’m not there yet.  This forum is amazing & I thank everyone for sharing & understanding. 

Good luck Yash 

Comment by LVL on January 10, 2018 at 1:08am

Hi Yash,

I’m sorry you’re going through this. It is awful as women. I am 34 and was diagnosed last year. Some days/weeks are easier and some are really hard. I am on plaqueniI. I was taking it last spring but was getting bad cramping. This time around I don’t have any side effects. I had an eye exam prior to taking the medication. My doctor and the eye doctor both didn’t seem too concerned about actual retina damage. My doctor had suggested injections as well but I have chosen to use a liquid compound of minoxidil and finasteride on my scalp. I have only heard from one person about positive Outcome of the injections. Unfortunately there is no actual cure. No doctors really know what to do they are all kind of grasping at straws’s. It really is just in evitable we can maybe slow it down with what we’re doing. It is super hard and I understand how you feel. 

Comment by Yash on January 9, 2018 at 5:46pm

Hi, my name is Yash and I have just been diagnosed with FFA. I’m devostated that it is irreversible. My hair started to receed 6 yrs ago and I never noticed it until last year when my bangs were totally gone and my forehead starting getting more prominent. 

Has anyone else diagnosed at an early age as I believe it generally occurs when you are Post menopausal but I haven’t gone through menopause yet. I was also told the hormones I took with IVF May have made it worse. 

Is anyone taking plaquenil tablets and has there been any side effects? 

Comment by Jules Australia on January 9, 2018 at 5:14pm

Hi Helen,thankyou for sharing your story with ffa & the photos. The freedom wig looks great on you, and very natural. I have also considered this option if the time comes &it moves back to the point where i find it too hard to 'walk out the door'. My only concern is if my scalp is still tender & itchy how this would work with the freedom suction cap. I have scalp tenderness not only across front but also over top (espec on right side) & a particular spot not on crown but almost as far back more to right side.Have you experienced any scalp discomfort with yor FFA or are your symptons asymptomatic? Iwas wondering do you wash your hair in shower while wearing it or otherwise?

Comment by Tessa on January 9, 2018 at 3:48pm

Hi,

Can anyone recommend a good place for wigs in Sydney, Australia?

Comment by Airam-FFA on January 9, 2018 at 3:09pm

Hi Helen

Thank you for sharing your story. It is good to hear about different options, and how people get on with them. I have been thinking about ‘the Lucinda Ellery’ option, but don’t like the idea of the cost and maintenance. 

Can I ask you if you shave your entire head or just the front section and have a partial hair piece? 

It is lovely to see how positive you are with this crappy condition.

xOx

Comment by Halfbakedwho on January 9, 2018 at 12:35pm

I second the thank you to you, Helen. I have been pretty preoccupied by my hairline these days. My GP just gave me something to « calm me down » which is normally not my thing but I accepted it. Every day is different - some days I forget about it, some days I’m not okay. Right now, I need to have dinner. (!!)

Comment by Minter on January 9, 2018 at 9:05am

illustrat8r, luckily (considering how many other products make me itch)!!!!! dry shampoo doesn't bother me- though I did just get a different brand as I had a coupon ;-) so will see how it works out.  I did notice there is a huge selection of dry shampoo in the hair care aisle now, so we aren't the only ones who use it!

Talcum or baby powder or cornstarch are a good substitute and may not irritate your skin as much, so might be something to try - and they are the original "dry shampoos" though it might be a bit of trial and error as it wouldn't be as easy to use as a spray.  

Oh and of course your hair looked murphy's law fab-awesome, you were home all day! ;-D

Comment by Minter on January 9, 2018 at 8:33am

You look great Helen M! To be honest, what you have done is what I consider doing when/if the time comes, I tried a semi permanent hair piece and it wasn't for me.  To read your story makes me more convinced that if I need to do it, it will be the right thing.  Thank you for sharing :-) 

Comment by Helen M on January 9, 2018 at 5:50am

image.jpegimage.jpegHi Everyone

Alopecia does not define who you are. Yes it is a hard when you are first diagnosed, and it is a journey that is individual to each person. I spent 10 years with more and more hair falling out each year. The medical experts advised me it was FFA and that it would be a miracle it it ever grew back. We tried steroid cream and some medication, but nothing improved. I managed to keep my head up and tried to not let it affect my confidence, despite people steering at me. Then by early last year it had progressed to where I noticed my confidence slipping so I decided to take full control. Went to my hairdresser and we shaved it all off - we had a laugh that day. I then wore a temporary wig for 3 months while Freedom Hair Wigs made me a real hair wig and I love it. I miss my natural waves but it is worth it and I can always get some put in. I honestly wish I'd done this years ago. My partner loves me for who I am so most of the time at home I don't even bother to wear it. It is quite liberating to have a bare head. I shave my head in the shower each morning. The wig has a silicon cap and it stays on even in a storm. You can swim and run in it. If something like this is an option for you I really do recommend it. Have attached a before and after photo.
Helen Mason (New Zealand)

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