Replies to This Discussion

Permalink Reply by Lu on January 18, 2019 at 2:37am

Hi La,

I’m newly diagnosed too & my hair loss sounds similar to yours. I had the Sydney Skin Hospital recommended to me but they had a 4 month wait. I ended up seeing a very nice doctor at Sinclair Dermatology in Melbourne & only had to wait 3 weeks (didn’t want to lose any more hair than I needed to before I started medication). Sinclair does alopecia research so I figured they’d be at the cutting edge of treatment. 

Good luck. 

Permalink Reply by Kate on May 19, 2020 at 9:38pm

Hi La & Lu

I'm in Sydney too with FFA.  Diagnosed about two years ago. I haven't tried any treatments yet as the site effects to me sounded worse than the FFA which I've so far managed to conceal with a rejig of my hairstyle. But I think I'm at the stage where I have to consider Finasteride or some such.  How's your journey with FFA so far.  Any recommendations for doctors in Sydney who seem to specialise?

All the best 

Kate

Permalink Reply by La on January 19, 2019 at 3:47pm

Thanks Lu. 

Are you exploring hair pieces or not? 

What treatment plan have you been recommended? 

I went to Sydney skin clinic, but I felt it was a bit general. I’m going to another lady tomorrow, we will see how that goes. 

Thanks. 

Permalink Reply by Lu on January 20, 2019 at 12:59am

Hi La,

I’ve been started on a compounded pill of 0.5mg minoxidil / 0.5mg Dutasteride / 25mg spironlactone and a topical tacrolimus. I was told to not apply anything with SPF in it above my eyebrows (avoid hairline) & change to shampoo / conditioner with no sulfate or paraben in it. Independently I’ve had an iron infusion as I was really low, take iron & vit D supplements, something called “Hair Help” that was recommended by a hair transplant doc, & am trying to stick to no gluten, dairy or soy ( even though the doc said there was no evidence diet helped). The doc said they would consider doing a hair transplant after 6 months of treatment - said they had done quite a few on FFA patients with no problem. I haven’t looked into hair pieces yet .. just wear my hair done (really self conscious in a ponytail) & toying with the idea of wearing a wide headband ... it can become my “thing”.

Good luck tomorrow. Hope she’s a bit more helpful. 

Permalink Reply by CurlyK on June 25, 2020 at 5:52pm

Hi La! I'm so sorry to hear of your diagnosis. I know how incredibly difficult such news is, having been diagnosed with FFA in July of 2016. I've shared my story on here before and it's written in full on the Cicatricial Alopecia Research Foundation (CARF) website under member stories. www.carfintl.org 

I also believe I have female pattern hair loss although not specifically diagnosed. I've had significant hair loss so I wear a bonded hair piece. If your loss is minimal at this point, you can look into different toppers to find one that meets your needs. You'll find many excellent choices out there these days. 

I wish you peace and hope in your journey!

Permalink Reply by Louise on July 22, 2020 at 6:43am

Hi,

I have been here before Covid19, after that everything changed. It is not possible to get hairpieces, not possible to go to the hairdresser. The stress has had a huge negative impact on my FFA och LP all over my scalp.

It is impossible for me to have a hairpiece due to the severe inflammation on my scalp, which is covered with bleeding wounds.

On the whole, I'm physically healthy, but mentally I'm a wreck. I am so amazed when I see that most of you accept your fate. I can not! Since my diagnosis four years ago, I've been hoping not to wake up the next morning.

I can not meet friends and grandchildren outdoors because of all the wind. Indoors does not work due to covid19. I can not stand to get uglier and uglier for every month. 

It may be that this sounds superficial to most people, but it's my reality and I guess that it is for many of you.

I have tried most drugs, even those with serious side effects, but nothing helps. I am trying to survive with the help of antidepressants and sleeping pills.

I want to get in touch with people who suffer in the same way as I do, because I think many do, but it is taboo to talk about it.

Louise

Permalink Reply by Desei on July 28, 2020 at 4:06am

Louise!  

I am so sorry to hear how low you are feeling - I have been almost as low at times, but am learning different ways of camouflaging my receding hairline (now about 2-3" after probably 3-4 years), and being more comfortable in myself.

When outdoors in the wind or even no wind, I always make sure I either have a pair of glasses or sunglasses on with the hair tucked underneath the arms - the glasses arms, not mine. ;-)   The glasses are just my reading glasses, so everything past about 2 feet is blurred but I figure that some people cant see much past that distance anyway (which means less people are probably looking at me too!) 

And of course also, or instead of, a hat or fancy wide headband or scarf, or beret or nice knitted beanie (in winter here in Oz).  I have a wonderful collection now of hats and head coverings - I have the top of me and the very bottom of me covered now as I am also a shoe person. I get a lot of compliments about my knitted and other berets, hats and scarves and they don't even know that it is mainly to cover up my hairline.

And another trick is I sometimes 'stick' some hair down in front of the ears with any goopy hair product that will stick to my scalp - it gives a nice bit of camouflaging coverage and draws less attention to that hair-less band, and in combination with glasses, hat etc is an additional level of 'security'.  Also, using makeup/foundation (never sure what to call it as had never used it in my youth) to even out your skin colour makes the 'band' less noticeable.  I sometimes 'colour in' my hairline with hair-like strokes of eyebrow pencil to give a faux hair appearance and again draw less perceived attention to that.

Speaking of attention, most people are NOT looking at me or you, they are too busy thinking that people are looking at them.  Humans!

I have no eyebrows, but have a wonderful beautician here in Ballina who has tattood/microbladed the best eyebrows - they are the envy of many friends and family!  My beautician has also said she can do some tattooing to my scalp (lots of little dots apparently) to again give a darker appearance to the scalp, and at first or second glance the appearance of thicker hair.  Not quite ready for that expense though.

I told my doctor once that it sometimes got me down that friends and others had wonderful or even not so wonderful hair but just didn't have to worry about their hair and they just generally looked relaxed and relatively beautiful which made me feel sad.  She simply said, "don't let that get you down, they will undoubtedly have some other problem that you can't see".  Strangely, that made me feel a lot better about myself!  We must all have something to hide one way or another.

I don't get on this forum much Louise, but I am glad I did today and saw your post.  I hope I have given you some solace and some techniques to help you still feel as pretty as you always have.  Being anxious really shows in our face, and our demeanour and can create a barrier between us and others - when I am wearing a lovely unique beret or ubeaut scarf wrapped dramatically around my head (without looking like a fortune teller or oldtimer hippy), I am more confident and relaxed. We are more than our appearance, but as I think Lu said up above, we can make our own style with hats and hair coverings.  We can be who we want to be – time to reinvent!

xxDb