Counselling?! We are our own!

I got my FFA diagnosis by biopsy  in January 2014, 4 years ago.
Here’s my first post in this forum:
” Just diagnosed ( twice) with probable frontal fibrosing alopecia !
Only went to doc for skin check up! Mentioned recent hair loss as an after thought- WHAT a bombshell!
Waiting for biopsy to confirm for sure then will start looking at what can be done. 
Down in the dumps at the moment.
Liz”
Almost 4 years ago since the bombshell hit!
So much has changed since then, and NOTHING positive on the hair front.
I often browse though this ffa forum to see what seems to be working or not working as the case may be, I have been inspired many times by some of the fabulous ladies here and coming here has been a form of counselling for me.
 
One lady who immediately comes to mind is this lovely lady, Sista T, her post is here, ½ way down the page ‘ My Hair Peace”
 
 
For the last few years this post helped me so much, I would just put on one of my headbands and go out and enjoy life.
Thank you Sister T.
 
Another very recent post was by Sallie, her fabulous blog post is here:
Sallie’s words…….
"I recently came across this photo taken by my husband about six years ago when we were on a trip to the eastern part of my country.The image stunned when I first saw it because I saw myself as I was then.I'd forgotten what I looked like. Quite honestly, the tears fell because the pain of hair loss screamed at me again”
 
Sallie writes so eloquently :
 
"I have progressed through the stages of grief over this new appearance of mine.  I’ve cried.  I’ve hidden.  I’ve screamed.   I denied that this could really happen to me to the degree to which it has happened. I’ve spent a lot of money on cures and cover-ups. I’ve been through the bargaining stage where I thought if I just changed my life style, the creams and lotions I used, changed my diet, this condition would die out.  None of that helped much or changed the advance of this progressive and permanent condition.  Those words progressive and permanent, I was just sure would not apply to me when I first heard them, but those words are true, and they are my reality.  Acceptance has been a long time coming, but day by day, I accept that there is so much in life that I can not change. “
 
Here is a lovely response to Sallie’s post:
"Sally, I just read your blog post and almost feel like I could have written the same thing, from the fighting my thick curly hair when I was younger to trying to figure out what to do about my hair loss now. I've lost about the same as you, a couple inches all around the hairline and temples and try to find ways to hide it. I've had this about 5 years now and coping with it is easier but still not easy to deal with everyday. I still don't share with everyone but I have become more open about it. And you're right, it's not cancer, but it is permanent and a life long struggle. I'm glad to know I'm not alone."
 
Me again:
Over the years, I’ve read plenty of comments by various ladies here that really hit the spot:
 
"Honestly just being able to vent about things that no one would ever be able to understand unless they are waking up every morning dealing with the realities of this "shitty" condition helps so much. It's so hard (impossible) to explain to anyone why this is so all consuming and so devastating. It sounds superficial but it is so much more than hair loss. I wish I could forget about it but the scalp sensations and skin issues for me are such a reminder everyday. And as a smart woman to not have any clear direction on any way to help or move forward in any way is just beyond depressing. .. …...I have always been such a strong woman but I have no idea how I could ever get through something like that. I thought I was strong but this is testing me in ways I never knew."
 
" I'm 62 but my war paint goes on every morning, I love clothes, I look after my weight, eat healthy, have had facial CASI's for about 18 years, get my nails done every week, travel all over the world and off the beaten track,have a very demanding but fulfilling job, kids, grandkids, a great hubby, and am determined this bastard condition will not get the better of me.”
 
" Instead of shopping for shoes on Zappos I’m bookmarking wigs online that I like on different wig sites. Never in my life did I think I would be needing to do this but here I am. I have to adapt, take a deep breath and move on-that’s my realization for today. It makes me really sad this stupid disease. I hope someday they figure out why it’s happened to us"
 
“…….would be great to just get on with living life, however;the symptons of this disease really can, often, make that a very difficult thing to do!! I apologise for the long posts, but sometimes it feels good to vent espec to those who truly get how this can be such a struggle...thx for listening”
 
"I know what you mean about being tired of fighting. I too was exhausted by trying all sorts of remedies and trying to cover my hair loss. I felt like I got ‘me’ back once I got my hair piece and stopped being self conscious on a moment by moment basis. Choosing to get hair is a difficult decision. It’s also difficult at first to start wearing it. Now it’s my new norm and I’m very happy I made this choice. I’m sending positive thoughts and prayers your way as you start exploring other options.”
 
“…...When I was diagnosed I googled on this condition and saw so many women with practial no hair at all on the front, just some straws on the back. I got such a severe panic that my husband had to take me to the ER….”
 
"it is a horrible thing to be living with 'day in day out' & understand the desperation people feel.... I myself have often found the symptons of this ghastly condition to be extremely emotionally & psychologicaly distressing & disturbing…..”
 
"Last night I was doing research on this disease & it made me really depressed. I have to stop doing that. But it’s hard. I wish someone famous would come forward to bring attention to FFA so we can find a cause or cure.”
 
“…..there are ups and downs seemingly everyday. One day I feel sort of ok but the next day I am a mess. So long to get ready every morning trying to hide my “secret…..”
 
"your words describe my exact thoughts.....the awful thought of possibly having to worry about & deal with this chronic progressive conditiion for the rest of our lives or at least much of it....at times it just becomes so draining, taking so much joy from our day to day living”
 
"It's not fair that this condition robs us of so much. There are some days where I wish I could shave my head but I know I would look like an alien! I hate how much this affects all of us. I don't want to think about this everyday for the rest of my life but I think that's the new reality. People don't understand that this is much bigger than just losing some hair”
 
"I chose not to go the medication route due to side effects and lack of strong evidence it would make my hair grow back so I opted for the hair piece route. I just got my new hair piece after wearing one for a whole year. This was a great decision for me as it works for my busy life, and my self-consiousness gave way to self-confidence again. The hair loss has gotten worse since my diagnosis, receded back to my ears, diffused on top and back. Some days I still feel very sad and almost shocked that I have something so weird and rare as FFA. This forum has been a real life line throughout my journey! Hugs to all”
 
"Very discouraged....getting worse with extreme loss back from forehead and around ears.I used to be able to pull the sides of my hair down under my pieces, but am finding that will not work anymore. It is so freakish looking; cannot ever leave my house without head covering and so uncomfortable without it.Just a shitty, shitty situation.”
____________________________________________________________________________________
 
Me again:
So, the reason I titled this post ‘Counselling’ is because I have often thought I SHOULD get counselling to deal with the distress this ‘thing’ has caused but in this forum are a great group of women who UNDERSTAND more than those around us what living with ffa is like. Our counselling group is HERE !!!
I almost want to stand up and say “ I’m Liz! and I have ALOPECIA!  “  rather than hiding it as much as possible from all but the very closest friends. I think of it a thousand times a day, and cannot even broach the subject without bursting into tears.
So anyway, with my thanks to everyone who shares their stories and their thoughts in this forum, here is my story, I hope it will be of help and support to others:
I’m 64 years old, naturally positive, super active, LOTS of energy, golf regularly, travel a lot, go out a lot but dealing with the *****^%$* condition that is ffa  is getting more difficult and depressing as the years go by. I always felt so guilty that I was so upset about losing some hair when so many others had far worse things to deal with!
 
I decided to go the natural route and not take any of the many drugs offered to me by various physicians. I have had tests galore trying to narrow down any possible causes of an auto immune disorder. I have had several sessions of steroid injections in the scalp, I don’ t think they did anything.
 
I have drops prescribed by a lovely lady trichologist at Phillip Kingsley in London , they are similar to Regaine/Rogaine.
Also scalp tonic from Phillip Kingsley.
I use synalar gel to rub on to the inflamed areas once a day.
Various test results show many interesting things:
no vitamin D
no vitamin C
copper toxicity
low zinc
low iron
high aluminium
food intolerances
Secretary slgA  is high 
( Secretory IgA* 
Elevated levels of sIgA have been associated
with an upregulated immune response.)
I also have ‘leaky gut’ which means that toxins from food not digested properly in the stomach ‘leak’ through the gut\large 
colon into the blood stream and can lead to allergies, food intolerances, and play havoc with the auto immune system etc. 
It also means that nutrients in my food are not absorbed correctly, which is why I don’t retain vitamin C or vitamin D.
 
I am gluten intolerant so have cut out gluten, I am DEFINITELY dairy intolerant so that's out too and I must say that the eczema I have always had disappeared as soon as I cut out dairy!
( A fascinating book on ‘leaky gut’  is ‘ The Clever Guts Diet’ by Michael Mosley which explains in great detail how the Western diet drastically affects health AND the immune system)
I have always had very sensitive skin and react to many, many things and because of high sensitivity to sun I use SPF liberally and have done so for many years. I read somewhere in this forum that there could be a link between ffa and SPF in creams, one day research will tell us more.
Over the past few years I have changed my diet, first vegetarian, then vegan although I do include fish. 
I have to say that I do feel so much better for the dietary change.
After seeing a nutritionist recently, we have streamlined the supplements etc that I take to this:
 
daily smoothies with veg, berries, flax, macapowder, kale, spinach
vitamin supplements   D, B12, C, 
turmeric
zinc drops
omega 3 oil
cat’s claw ( an anti viral amazon herb)
lemon balm tea ( also anti viral)
liquorice extract (which is very supportive in times of stress which def does not help auto immune conditions such as ffa)
 
I do yoga regularly which helps to control stress.
 
So, as to the hair issue, well firstly I must say it does NOT stop me from doing what I want to do, I refuse to be defined by hair loss and have it control my life!
 
When I was wearing hair bands all the time, people often said they actually liked the look and got so used to me wearing it that it just seems to be ‘just the way I was’
 
The hair loss now has gone quite far back at the top and I have no hair at all in front of my ears. 
My husband was away recently for a few days and I was walking around the house without the hair band that I always wear, even at home, and I kept catching sight of myself in the mirror, no hairband, ½ a head of hair and I must say I went into a bit of a meltdown for a couple of days and boy did the tears flow!
 
It was at that point that I decided I had to actually do something about my appearance.
 
So, I researched local wig suppliers, found a lovely place not so far from me in Shepperton UK, where the ladies there make wigs for stage and screen and also for alopecia sufferers, they have a large selection of gorgeous wigs that I was able to try on. I visited them in a huge state of nervousness and trepidation but they totally put me at ease in their private room. The tears came when I removed my hair band and showed the hair loss to a ‘stranger’, that was tough! 
 
But I tried on a few wigs and really liked the look of them. 
I went back a few days later with my daughter who was visiting for Christmas and we tried on some more. That was another milestone, my daughter hasn’t seen me without a hairband for years  and I’m sure she was shocked when she saw ‘it’ but she hid it well. Her support was amazing, especially during the next few days when I introduced my new hair to friends & family.
 
To cut a LONG story short I walked out of there with a gorgeous wig and nervously went to see my 2 closest friends who were super supportive and encouraging. Next was hubby waiting at home and my son also at home. I should not have been so nervous because they loved it. Said that I just looked like ME again as the wig was pretty much the style I used to have before the hair disappeared.
 
I’ve been wearing it for a few days now and I really do feel I’ve got my mojo back. 
I look in the mirror and actually smile instead of cringe which is great for my slowly returning confidence.
 
I will still experiment with fake fringes and will look into bonded pieces as some ladies here have done with great results.
But for now, I’m loving wearing the wig and have been watching you tube videos about ladies who wear wigs for various reasons and I’m getting great ideas for my next one. 
This lady on You Tube is great for wig ideas:

Jill Lynn Beauty Therapy
 
I never in my wildest dreams thought I would end up wearing a wig, I was always defined by my hair, as a young girl I had gorgeous white blonde hair, very long, so I suppose that made losing most of it permanently even harder.
 
But here I am at 64 , raring to go , got my mojo back and finally, MAYBE coming to terms with and accepting the way things are going to be in my future!
 
I hope this hugely long post (sorry) will be of some help to ladies in our group, as I mention, we are each counselling each other and offering support in a private place where we can privately ‘let our hair down’ ( so to speak )  tears and all!
 
Liz

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Replies to This Discussion

Permalink Reply by sallylwess on January 1, 2018 at 5:52pm

Thank you for sharing your story.  You are not alone.  It gives all of us courage when we read each story.

 Thank you for your kind words about my blog post.  I too have gone to wearing wigs and feel like I am getting my “mojo” back, or at least I feel as if I look more like my old self so that makes me act like my old self.  

I have journaled about my hair loss, blogged about it, been a part of this community, and a part of the Facebook community for those suffering from FFA/LPP.  Quite honestly, I wonder how I would have survived without you all.  I also have been in counseling for help in dealing with this loss and another great loss in my life, the death of my daughter.  Counseling helps.  It also helps to know there are others out there that get it when it comes to living with this crazy disease.  

Have a fabulous new year.  Blessings.  

Permalink Reply by Liz Lov on January 1, 2018 at 6:14pm

Thank you for replying Sally. My heart goes out to you for the loss of your daughter.

After realising that I can no longer manage my appearance with hairbands, I have been wearing my new wig every day and I'm surprised how quickly I've got used to it. The style is just the same as I had it several years ago so for the first time in a few years, I see 'me' again when I look in the mirror which is a huge confidence boost. 
 Happy New Year to you too ;-)

Permalink Reply by Jules Australia on January 1, 2018 at 7:52pm

Hi Liz Thanks for putting together the collection of 'councelling' comments made by the many lovely ladies from this group, all of us suffering this condition while trying so hard to get on with daily living.A few of my comments were amongst them. Reading them all one after the other (in the way you displayed)really helps to validate how the symptons of this disorder can affect us & to know we are not completely alone with our emotional challenges & feelings....I think it just helps so much to have conversations with others who are experiencing so many similar, very challenging issues that ffa/lpp creates for us, whereas otherwise it can feel like a very 'lonely' disorder. I am sorry to hear your ffa has advancend further to the point it has. I've had mine for well over 5yrs now, having had a couple years where the scalp trichadynia symptons became much milder & the loss very slow. But after a flare in March 2017 of that horrible scalp tenderness pain creepy crawly itchiness & more loss back from forehead, sides, & all around ears, 2017 has not been a pleasant year for me living with this, which sucks, as I am pretty healthy & had a really good quality of life without this. Lately my blood tests have revealed very low serum zinc level (7)....prior to that it was in normal range (but at lower end, about 12 to 14). I eat a lot of red salmon ,fish, good amount red meat etc. So not sure what's going on there.My calcium vit D iron cholesterol are all normal; thyroid in normal range but at lower end. I noticed you said you had the lucinda ellery system not so long ago, but said u now wear a full wig. Is that because the extent of loss means the L Ellery system is no longer sustainable? You sound happy with you wig....would you feel comfortable with showing a photo. Lso i think you mentoned a while back that your Mum had ffa also ( but it came on in her later years, was that right; because my Mum, who's well into her 80's has it also. Thx again for the composition of selected comments....I have kept a personal book I have written many of them into, which i look over every pnow & then.... Jules

Permalink Reply by Liz Lov on January 2, 2018 at 4:06am

Hi Jules,
Thanks for replying.

It's so great to have support here. I do have some very supportive friends close by but I don't want to overload them with emotions that could be quite overwhelming.
I have not yet had the Lucinda Ellery system, but I am now at the point where I will definitely conducer it. I hope to make an appointment this week, also to Mark Glenn London who do similar. I will keep this thread updated.
I'm going on holiday next week so I want to have their opinions so I can mull over future plans while I'm away.

I am happy with the wig so far, it has just been a week.
I look and feel like 'me' again- which has been such a boost.

You mention your zinc tests were low, as are mine. 

Hair sample testing showed I had high levels of copper which seems to displace zinc so now I take zinc supplements ( amongst all the other supplements) .
I've decided against other meds such as dutasteride, doxy etc.
Like you, I am pretty healthy with a very active quality of life so this does continue to be quite something to deal with .
My Mum didn't have ffa, I'm the first in my family.

I've been reading posts on this forum a lot recently, I think I've prob read them all now!
I get great support from here.

Best wishes,
Liz




Permalink Reply by Jules Australia on January 2, 2018 at 6:08am

Hi again Liz, I too have chosen not to take any of the meds on offer...the potential side effects or risk of other health issues developing from taking such harsh drugs just wasn't for me; and also I haven't found any efficacy that any of the research/studies can claim definitively whether symptoms improved or otherwise in patients from treatment with these drugs or whether the outcomes were just part of the natural disease course. I know some feel dutasteride has been a helpful treatment for them, but without any knowledge of long term effects & the fact that my Mum had breast cancer at 45 (mastectomy, but is still here today aged 88),i feel it's not something i would consider. However there are often times when the symptons of this disorder really 'haunts me' & I totally 'get it' when others try everything they possibly can to arrest it. While seeing the disfiguring pattern of loss slowly continue, texture changes etc, i think some of the most distressing symptons are the horrible creepy crawly ichiness, tenderness & pain which hinders the ability to take your mind off it. Have you had any of these sensory symptons & if so, have you found anything that really subdues them ?

Permalink Reply by Airam-FFA on January 2, 2018 at 4:05am

Hi Liz

Thank you got your post. I re-call many of the post extracts that you mentioned. This site is definitely a valuable lifeline for us all. I have only been diagnosed with FFA just over a year ago - but have probably had the condition for 4+ - but I am so glad that I found this site and the support of you lovely people. I am getting near to stage where I will need ‘a wig/hair piece’ so please would let me have the contact details for your wig contact in Shepperton.

Here’s to a positive and supportive 2018.

xOx

Permalink Reply by Liz Lov on January 2, 2018 at 4:11am

Hi, 

Great to hear from you, here are the Shepperton details, they are so lovely:
http://www.sheppertonwigs.co.uk

I'm also going for consultations to Lucinda Ellery and Mark Glenn
I visited this salon near to Windsor last week for a consultation, also a great option.
Hairinxs

Best wishes for 2018


Permalink Reply by Liz Lov on January 7, 2018 at 8:42am

Further to my above post:

I did have a consultation at Lucinda Ellery in London last week and while it looks like a very natural solution I don't think I will be taking that route as I feel it is high maintenance with 6 weekly visits to 'tighten' things up etc etc etc

I have been wearing a fabulous wig since just before Christmas and I feel the 'old' me has returned, instead of recoiling when I pass by a mirror, I now stop and say- ' Well Hello Liz, you're back'!
I really do feel like my pref ffa self again and have my confidence back.

I play golf a lot, so now instead of finding a sun visor with a high front to hide the forehead, I can wear normal sun visors over the wig. I've bought an extra hat which is one size bigger, Tilley Hats have drawstrings under the chin for windy days so there's 2 birds killed with one stone !

I'm learning how to manage wearing a wig, was really nervous going to London last week on a windy day , thought the 'hair' might have blown under the wheels of a bus, so I made sure to wear a coat with a hood!

It's all a learning curve!

But whereas 'pre wig' I thought there was no solution and I was STUCK with the hairband look, now I know I can look and feel attractive again and can change my hairstyle too from time to time.

Yes, wearing a wig is not ideal, but so far I'm super happy and a lot more relaxed.

All the best
Liz


Permalink Reply by Halfbakedwho on January 7, 2018 at 4:02pm

this is an amazing, important thread. Thank you so much. I want to take the time to read everything here. I am a psychotherapist myself, but it doesn't take away from needing A LOT of support myself as I trudge through this. Again thank you. 

Permalink Reply by Liz Lov on January 7, 2018 at 4:34pm

Thank you. This forum has been a real turning point for me, I always thought I should get counselling but I don’t know where to look, Bur after reading pretty much all of the discussions in this group I finally feel that they are people who are going through the same devastation and trauma that I have been since diagnosis 4 years ago. 

The more stories and ‘fixes’ we find for dealing with this ‘thing’ the more we will be able to keep helping each other.

Liz

Permalink Reply by diana on January 10, 2018 at 8:22pm

hi liz...  i'm happy to see someone else talking about leaky gut.  i have scarring alopecia along with leaky gut, food intolerances, i was B12 deficient, low iron, magnesium deficient.  have been doing alot of bone broth which is healing to the gut lining along with magnesium gel/natural calm, which you apply topically and absorbs into the body directly instead of taking a pill that goes in and most of it comes out as it is not absorbed.  i'm sure major stress i had in my life contributed to my leaky gut situation but i am getting better, nearly 5 years later. i can still cover up missing areas on my head with powder filler and hair placement as i haven't been able to find a wig or topper that i feel looks natural.  i even had one made for me at a hefty cost and really don't like it. that's just me but eventually /but hopefully not/ i may have to just wear it.  i have also  purchased a book by medical medium anthony william/thyroid healing, where i also have thyroid nodules and am into his life style/diet presently.  i do believe what he writes about regarding the epstein barr virus and problems it causes, which are plenty.  western medicine just doesn't get it.  healing begins with the right foods and nutrition..  please read the book and see how you feel.  it really won't hurt and it will probably help.  the best of luck to all.

Permalink Reply by Liz Lov on January 11, 2018 at 3:28am

Hi Diana,
Thanks for your reply. Super interesting on leaky gut, your food intolerances and deficiencies are SO similar to mine. I had NO vitamin C and REALLY low vitamin D. I'm allergic to most sun creams so the only way for Vat D to get into my body is through supplements which I now take.
Would be SO interesting to hear more results of ladies with ffa who have low Vitamin D etc. There seems to be such a link between SPF and ffa.

I have the book Medical Medium by Anthony William, super interesting, I've just now ordered the Thyroid healing to take on holiday with me, thanks.
Interesting re Epstein Barr, my nutritionist mentioned that so I definitely need to read up on that.

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