Replies to This Discussion

Permalink Reply by LeeKath on January 20, 2019 at 10:54pm

Thanks for sharing Diart I've heard of others who've managed to reduce their inflammation using CBD cream so I might look into it.

Permalink Reply by Louise on January 14, 2019 at 2:59pm

Hi,

I would never ever consider to shave my head, I would rather die. 

I will fight until I die against this disease, is a lifesentence. 

I have been taking any available medication and I am starting with a new one next week, it is a medication with a lot of side-effects. Honest, what value has life to offer when you are bald.

What do you say to you grandchildren when the say, please granny hide your head, we can see your bald temples, I can´t stand to be that ugly. I have lost about 4 cm on my temples and 2 cm in front. I look like a freek. I can´t wear toppers, headbands or wigs because it HURTS, My scalp i swollen and red.

I have no social life, my husband and I live apart since this disease struck the family. Every night I hope that I won´t wake up in the morning.

I can´t understand how you ladies survive with this disease, How can you live in a house together with husband and children. How do they react when they see your bald head.

This is worse than loosing a breast, arm och a leg. I could be a social person with that BUT not with this.

I have had this awful  condition for 3 years and I am getting more and more depressed, totally adicted to sleeping pills, antidepressives and even alcohol (wine). 

How do you cope with this?

Louise

Permalink Reply by Bloomingdalekid on January 14, 2019 at 3:07pm

I am so sorry to hear about your depression over this disease.  It is HORRIBLE, I get that, and it sounds like you have made the decision to take drugs with unknown side effects in the long term.  Personally, I chose NOT to take the drugs - my choice, I know.  My family is very understanding.  I just got comfortable with it I guess.  I hate looking in the mirror and seeing my very high forehead, but I am able to wear toppers without any long term effects.  It's also kind of fun changing my look depending on my mood.  Short hair, long hair - my choice for the day.  I hope you can work through this when this disease isn't so active to cause your scalp to be swollen and red.  Good luck!  This group is very understanding and we are all here to help one another.  Take care.  

Permalink Reply by Minter on January 15, 2019 at 8:50am

Louise, I have to say that sometimes I have had the same thought, that it would be easier to deal with a missing limb, or have a bald head because of chemo then because of this creeping insidious disease with all it's horrible side effects.  

Even writing those words sounds awful as I am one hundred percent certain that someone who was missing a limb or had cancer would rather have a scraggly half bald head in exchange for having their arm or leg or good health back.

But that is a perfect example of what this disease can do to one's self esteem, confidence and more.  I am so sorry you have gotten so sad and low because of FFA.  Because I know how easy it is to fall down that slope, I really do and I hope you are able to go and talk to someone about how you are feeling and if you are not, you be sure to talk to us.  

We are all going through the same thing in various degrees and are here for you and each other.  

Permalink Reply by Louise on January 15, 2019 at 3:02pm

Hello Minter and Bloomingdalekid,

Thank you for your response, It means a great deal to me. I am quite aware of how awful it sounds comparing this disease to cancer etc.

But I have a lots of friends who had or has breast cancer and all of them said that the worst thing is to loose the hair, even if it is for a short time and then will grow back. 

Three words broke me 3 years ago, Progressive, Irreversible and Incurable. In spite of that I am trying every possible medication I can get. At the time I did´nt know the pain this disease causes.

It sounds very odd to live apart from your husband, but it is my choise. I can´t stand to face my husband every morning without hair.

When it comes to my children I  can only say that they have no understanding at all. I quote "who cares how you look, have some perspective, you haven´t cancer etc. It isn´t the end of the world if you have no hair. Get a wig".

When it comes to friends: I have told everyone about my condition, the reactions varies from "Oh, how awful to loose the hair" to total ignorance. Today I only communicate with two of my earlier friends. My social life is more or less non existing

The absolute worst is my grandchildren, who I love a lot……..I break into tears when they comment my bald temples and my bald patches on my head. I don´t want them to look at me as a freak.

As I have no one to speak to but this forum and it means a lot to me. Thank you.

Apologize for the non-perfect English, but I am just writing down my feelings here and now.

Lots of hugs.

Louise

Permalink Reply by Minter on January 16, 2019 at 9:07am

Louise, I am glad you are writing down your feelings as it definitely helps to get it out.   I don't really have anyone else to talk to about this either, except for my hairdresser- who I am very lucky to have as she is very patient and has cut my hair in a way that I am (so far) more or less, though it is becoming less and less nowadays- able to disguise the hair loss along with using hair powders/concealers.

I am so very sorry that your friends and family are not supportive.  It is so easy to say, oh it is only hair- easy when it is not you going through it.  & I understand completely how it is actually easier to not live with someone then to have to face them with this hair that we have. I really hope for you that your family will be more understanding as it is a disease and not your fault.

I wish I could offer some great words of wisdom, but I don't have that talent, I will say though that you must keep writing and posting, even if just one or two people or even if nobody reads it, it still helps to get it all out.  Be as strong as you can be and again, you are not alone in this. 

Permalink Reply by LeeKath on January 20, 2019 at 11:08pm

Hi Louise.  I am very sorry to hear about your struggle with this disease. I certainly felt that way when I was first diagnosed and I had some very dark days.  I have grown to accept it and am now just navigating how best to live with it.  I guess we are all on this journey together and I have found this group a fantastic support.  One comment that really resonated with me was when one member said she had put a note on her fridge to remind herself each day "I am not my hair!".  We are all so much more than that.  I hope you can find a way to make peace with FFA. Keep in touch with this wonderful group here. We are all here to support one another.  You're in my thoughts.

Permalink Reply by Jan on January 27, 2019 at 11:53am

It is a very unfair situation all us ladies are in, but I've watched 2 friends die of cancer and I've come to the conclusion if this is the worst thing that happens to me - well its not too bad! I know exactly what you mean about the temples etc. I found a very good hairspray in the U S.A  whichnis something like freeze hold. Works very well even in windy weather. I will at some point this year resort to some hair help in the firm of a wig/hairpiece as my husband worries about my situation more than me. I just think people look, then carry on with their lives....in the summer I add odd bits of colour  to make what's left more interesting! Please don't depressed. 

Permalink Reply by Bloomingdalekid on January 15, 2019 at 3:22pm

The salon I go to deals with all kinds of alopecia, including FFA.  I have a bonded system and, as many others on this forum have stated, I am not to the point of shaving the crown of my head in order to adhere the piece - right now I use links.  BUT, having said that, many of the salons customers end up shaving the crown of their heads to get a better bond that is more comfortabkle.  They only made that decision after realizing they would never go without bonded hair again.  I am not there yet.  I am experimenting with my bonded piece using clips - making it into a topper so I can take it off when I am not going out.  It has also afforded me the opportunity to purchase other toppers that are not human hair....  and run about $250.  The bonded piece was north of $2000.  I figured if I have to deal with this nasty, awful disease, I might as well have fun with it.  Although I haven’t told all of my friends that I wear a hairpiece, I probably will in the near future.  Hey, we are dealing with a very rare form of alopecia - there is no cure for it right now..... so why not have fun with hairpieces?  It’s kind of when I had to get reading glasses - I got some of the craziest colors and would just tell people “Hey, if I have to have reading glasses, why not have fun with them?”  I am at that point with hair too.  I am fortunate that I don’t have much more than an itchy scalp, and of course the dreaded forehead recession PLUS thinning at the crown.  I REFUSE to let this disease define me or ruin my life.... it took me a while to get to that point, believe me.  

Permalink Reply by Fi on January 16, 2019 at 7:29am

Hi Everyone

I am in the Cambridge UK and have been thinking about options for a hairpiece/integrated system etc.  I have visited a few places for wigs and the problem for me is that I have a small head so not many fit me, and my hair at the back is still quite thick so a wig would be very hot.  I would like to see about getting something tailor made and stuck on at the front.  Is this possible? I would be grateful if someone could advise me of something in the UK . 

I have been diagnosed with ffa for 18 months and although not that noticeable to others I am finding the  loss of confidence a huge drain and I just want to get on with my life now.

Thank you all for reading.  This is the first time I have posted.  x

Permalink Reply by Minter on January 16, 2019 at 9:10am

Hello Fi,  I am sorry you have to join us, but glad that you have found us because this is a really good, supportive group that has helped me a lot :-) 

Look into Lucinda Ellery, they have salons in the UK & do a free consultation and even though it wasn't for me- they do fantastic work!  

Permalink Reply by CurlyK on January 16, 2019 at 7:38pm

LeeKath - I SO relate! I never did any medications because by the time I found someone knowledgeable enough to know what this was, my hair was too far gone. I did all of the products, shampoos, Toppik, etc and thought of shaving my head but I'm glad I found a solution in my bonded hairpiece. It gave me back my self-esteem to the point where many days, I don't even think about it. Saturday night I saw a friend I hadn't seen in a few years and she complimented me on my hair and how pretty the style is. I just smiled and said "thank you". :) 

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page