Mother of Alopecia sufferer

My 26 year old daughter has been dealing with alopecia since she was about 10. It started with bald spots which would regrow, only for a new one to develop. Over the years the bald spots grew bigger and more frequent until now she has alopecia universalis with not a hair on her body and has been told that it is highly unlikely her hair will ever grow again. She is feeling very low and demoralised and I want to help her get help - any suggestions?

I feel it would be good for her to talk to other sufferers, that she would benefit from access to good wigs - but these are expensive and money is tight. She has 2 young children and is a full time Mum but her condition has affected her confidence and going out is becoming hard for her and she cannot envisage coping with a job. I think that she needs help to come to terms with it psychologically, as well as with the practical aspects. I would appreciate any advice

9 Replies

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  • Hi KMG10,

    Good morning. I didn't want to leave your post unanswered. I will leave a comment later today.

    I hope others will too.

    PP

  • Hi

    Thanks for this - yours is the only reply so far. I shall look forward to hearing from you.

    KMG10

  • Hi KMG10,

    I think this site is a little under populated at the moment, and it is not as familiar as the old site so not so easy to navigate or see new posts, so I suspect it is a combination of these reasons why you haven't had any posts yet.

    {Everything I say below is (or was) available on the Alopecia UK website – have a look at the old website or perhaps archives here}

    I am so sorry that your daughter has been struggling with having alopecia. It is hard for you to witness someone you love going through difficult times.

    Alopecia creates a kind of grief response, sadness for the loss of your hair and having to adjust to being different from those around you. It can be extremely isolating.

    Has your daughter visited her GP to see what can be done in terms of NHS wigs, I believe that she may be entitled to a wig on prescription . Wearing a wig restored my sense of self and enabled me to ‘forget’ about alopecia a bit.

    I buy my wigs online, and buy what I feel is an attractive but an inexpensive wig. Take time, research the different types etc, and start small in terms of price. You don’t have to spend a lot of money to get a good wig, but customising (getting the wig cut and sometimes thinned to suit your face) is a must in my opinion. She might do like I have done and learnt how to customise my wigs myself, but there are now hairdressers who offer this service.

    Please try and encourage your daughter to come online and join the Alopecia UK community, have a look at the threads, read about other peoples’ experiences, perhaps even visit one of the support groups if one is held nearby.

    I hope that helps KMG10, if you would like please personal message me if you would like more information/help with wig websites and pointers on how to get started with that side of things.

    PeppermintPattyUK

  • Thanks for this.

    I want to help my daughter come to terms with her alopecia. She wears wigs but finds the need for frequent replacements stressful and expensive - not a helpful system through our local NHS. She has permanent makeup for eyebrows and eyelashes - again expensive but helps her face the world. I would like her to come to terms with her condition and to be able to live her life to the full. I feel that she needs to adjust psychologically which is hard because she is sad and having been told that her hair is unlikely ever to grow back she is going through a sort of grief that similar to a bereavement.

    I encourage her to join Alopecia UK but at the moment she is resisting. I feel meeting others with the same condition will help her feel less isolated so I have offered to set up a support group in Gloucestershire where we live but have not heard back as yet.

    I get the impression that you have reached an equilibrium about this difficult condition and this is what I hope for my lovely daughter.

  • It has taken years to reach this point of being okay with who I am and what I have (or more to the point what I haven't got!), like everyone, I have my 'I hate alopecia days', where I am just a bit sad/whiny and everything is too much.

    You are doing so much for your daughter by trying to understand what she is going through, and attempting to find solutions to help make things a bit better for her. She is very lucky, not everyone has someone close to them who can appreciate what it is like to be without hair.

    Is she not happy with the style or type of wigs she is wearing? That made and makes a big difference to how I can cope with my alopecia. If my wig isn't right, I get low.

    It takes time and set backs are inevitable.

    PP

  • Hi i have had alopaeca totalis snce i was 13 (am now 56) became resigned many years ago that there is no treatment.

    I too went through all the bullying and traumas at school, meeting men, gong into hospital to give birth, worrying i would pass it on to my children, my mother was so supportive too.

    You are doing all the right things i too have semi permanant eyebrows and false lashes, i have always worked just had to get up extra early to "get my face on"

    Is your daughter still under the local hospital as a few years ago after many years of paying for my wigs that you are entitled to a prescription for 2 a year. I have an appointment once a year and the doctor gives me a letter for the orthotics dept, they then issue an order for 2 wigs and have a list of suppliers or you can use your own.

    As i have always worked i pay £57 per wig but if she gets free prescriptons -no charge.

    She can then go to the suppliers and choose from the entire range even the more expensive ones.

    On the subject of wigs in my experience short, long, or straight do not look natural or last very long, the best are to the collar not shaped into the neck and with a bit of curl to give body to it.

    The suppliers also sew some oil silk into the wig so i can attatch double sided tape to keep it in place, this has allowed me to live more of my life, ie had horses and rode for many years i now play golf and dont have to worry about the wind, i swim in an older wig as they do not like the chlorine, but i avoid choppy seas and too many splashing kids.i also avoid the big fast fairground rides. She needs to focus on what she can do and i am always thankful that i am not a cancer patient suffering hairloss because of treatment, the old adage that there is always someone worse off works for me.

    Hope this helps,

  • Hi, its takes time,

    I can understand your daughter not being ready to join a forum, i used to cry when i read about people who's hair has never grown back, cus you don't want to let go of that hope.

    but when you start to get used to the idea, which probably sounds crazy at the moment, it does get better. Mainly because life gets in the way of alopecia. You and your daughter will just get on with it. I have to say I do think alopecia changed me, not just my appearance. I never had much confidence before and when it all went i was devastated, i felt alienated and different, ugly in fact. I hate the fact that it made me feel like that. But now I feel it has made me stronger. People will accept you for who you are, but the battle is with yourself. Being accepted it makes that battle easier. My daughter is a teenager and my biggest fear was her friends but they thought it was cool, again once they knew they were like oh ok your mum is so cool and oh i love that hair.

    I think what i'm trying to say is you can feel normal again, its just a different more enhanced kind of normal. I used to hate going to hospital for my prescription, but now apparently you don't have to go in you can do it all through the post, also with the prescription only covering £120 its not even worth it. get a decent wig and it will last longer, not a long one, they don't last.

    regarding wigs, I've worn a codi monofiliment, its a trendy bob, lightweight, fairly expensive (£160 isn), but you get the vat back, i get it from wigs and pieces on line, they are very good. Ive worn same style diff colours for years. It always amuses me when i find that people i have worked along side just don't know its a wig, it really is so natural. x x x Wear a buff for sports n leisure, my god there are so many gorgeous hats to buy, i love buying hats, i wear a swimming cap for swimming too, its what she's comfortable in, no one elses opinion matters. of course the best and most beautiful thing she could wear is nothing and just a big smile, cus she is stronger than she thinks. x

  • It's so comforting that there are other mothers out there having to deal with their young daughters, in the prime of life, having to deal with Alopecia. My 19 year old, in her second year of Uni has developed Androgenic Alopecia ( female pattern hair loss) and her hair is breaking as well..... no cure, genetic, no good prognosis, and tbh, consultants can't say the real reason why. Personally I think Stress has played a huge role, but this is totally unscientific.

    She deals with it in her own way - mainly getting on with her life and trying to ignore it. She has a great bunch of flatmates who are just fab and are helping her through it.

    Me - My heart breaks everytime she does break down and weeps.

    Thank you Linseed1 ad to the others for you encouraging and positive comments.

  • Hi forgot to say, has she tried Stila eyebrow pens? I use them, you have to practice a bit as you need to draw eyebrows on in individual hairs but it lasts all day.

    Regards

    Elaine