How do people cope with hair loss?: I recently... - LUPUS UK


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How do people cope with hair loss?


I recently started loosing my long hair - at first just little wisps here and there and then huge clumps. I had it cut short, and then today I went to the hairdressers to get it trimmed and as the hairdresser washed it a massive chunk fell out at the front resulting in me having to have it cut really short (think Anne Hathaway in Les Miserables!!) I am finding it really distressing and my specialists have just said its just part of the disease. Does anyone have experience of this and how have you coped? :(

14 Replies

yep hun i sadly do , ist time i lost the whole of my top hair (looked like fryer tuck) however dont despair as no one not even my son notices ,i clip in hair pieces they dont hurt and they dont pull at ur head, then i clip like a wool beret right on topso it just sit there and believe me not one person knew, except me of course and mental it effected me bad as i felt not only is my organs and skin being attacked so is my hair , i soooo luvved to dye it different colours have different styles u know, it grew back FULLY it took a year but it was pure white i was told that the pigmentation would stay that colour however i know have rich choc underneather and copper and gold hightlights so it did dye that was 2 years ago , however :( 2 weeks ago mine started 2 really thin , and now loosing clumps ,i refuse to give in and have it cut i have a long bob reaches to my shoulders so i comb over and back combe and again NOBODY notices, im just waiting as we speak for a call back as i have a red ring (again) around the bald patches do u? x

Poor Rachy and kitkat, I really feel for both of you, my hair loss was more like all over thinning, not sure if its any help to either of you but my hairdresser recommended a thickening shampoo that has really helped.

Love to you both, hope things calm down for you soon,


ps it was a professional shampoo from the salon - made by joico.

I think most of us have dealt with hair loss with this stupid diease when i was loosing my hair i was young and still am i was so worried i wanted to be like my friends why was it happening to me. I lost it from various spots my hair was loooooonnng im talking bum length lol but i didnt cut it i started using nioxin system 4 kit to make it more thick. But id lost alot of hair even a ponytail was impossible, the nioxin made my hair thick and seemed to stop it from falling out. But i still didnt know how to style this dump of hair i used to put my hair in stylish buns. So about 3 weeks ago i purchased 2 different clip in buns what a bloody transformation i havent told anyone about it apart from family and my fiance. But when i go out people give me comments like wow your hairs loevely?, how long did it take? .

Anyways, so now i wear the clip in buns when im going out and am just waiting for my hair to grow back to normal iv got short bits here and there but im managing and thats all that matters. im sorry to hear your situation when my hair started to fall out it lasted for 3 months then calmed down because i was using nioxin i must say it has made it extremly thick on top i cant say how differnet things have changed from the nioxin and the clip in buns.

What im trying to say is use a shampoo that can make your hair appear thick and stop it from falling out. Like nioxin or even regaine for hair loss hope i have helped.


Rachy - it's hard but a sense of humour goes a long way here. Mine is growing back now - but when it was thin everyone said they couldn't notice it ( ha! I knew they were lying). My new hair is curly - which is hilarious, because my old hair is dead straight. Guess what - everyone says they can't notice it... (even though I have a curly fringe and straight hair everywhere else).

Got to laugh.....

When I was a kid always wanted curly hair - and now I have it I hate it!

Hi I have hair loss when it starts to grow back it never groes back properly so I just keep it clipped I ahve a great selection of hats and a wig and people are very used to it now, in fact my daughter in law prefers me without my wig, the way I deal with it is I save loads of money on hair products, never have to go the hairdresser and never have a bad hair day just take it in my stride now it`s been like it for around 4 years

Hidden in reply to jennyhe

Hi jenny - I am seriously thinking of shaving mine. My other major problem since cyclophosphamide is madly sensitive skin (I have to wear sunscreen even in the winter when it's cloudy). Since I have to wear a hat all the time - hair seems a bit pointless... even though I have suddenly go lots of it, it is always sweaty and flat from being under a hat - glad to hear you keep yours clipped. Maybe I will shave!

jennyhe in reply to Hidden

Hi MaggieS, since I made the decision to keep it clipped I ahve never looked back, as I say I have a great selection of hats and a wig I wash my scalp in vosene shampoo which I find keeps it nice and healthy, so if you feel you can do it then give it a try, like you say your hair goes flat under a hat will wait to hesr what you have decided

I was so physically ill at the time I lost my hair that it was the last thing I had to worry about, but don't get me wrong I was very upset.

However, I decided to take control because I didn't know if it would all grow back, so I had the wisps shaved off, got a wig - wear a hat when it is extremely cold or windy and get on with my life as best I can with the physical health problems.

When it is warm enough I go around the house without anything - not this winter, though.

Others have made comments - well, that is there problem, I do what is right for me and those who don't like it know what they can do.

Even my husband told me to put my wig on when builders were working at the back and could see into our kitchen window.

I replied it was my kitchen, my bald head and if they didn't like it they could look the other way.

Don't let your hair-loss ruin the lovely spirit within or your life!

jennyhe in reply to Cann

HI Cann, it is upsetting when your hair starts to fall out but like you once I made the decision I ahve never looked back yes I walk aorund in the house without my hat let the air get to my scalp and my attitude is the same as yours people must think what they like my Husband is very good about it he never tells me to put my wig on I wear it when I want to my Daughter in law prefers me without my wig

There are a lot of us around - we need never feel alone or different!

I've been dealing with hair loss before.When i tried using Reloxe at I had heard about it's ability to naturally grow back hair and it worked within only a few months!

Hi, It's a pain I know.

I have a hair piece that just clips on top of my own hair and it looks better than it did before I lost it!!

It is real hair and I got it from a hairdressers in Harpenden called Sabrena's. They were lovely and I have never looked back.

You don't have to pay the VAT because it is for medical reasons. You just have to sign a form.

That saves 20% so it is a good saving.

All of us here know how it feels to lose hair and we all feel for you.

When I put on my hair piece I feel so much better and more confident.

I am sure that you will get used to it as time goes by, especially if you can disguise it like I do.

Also, you never know; it might grow back as it has for others.

Good luck.

Margaret x

i am just fed up thinking about my hair . i am too young now but my hair is too much thin .whenever i comb my hair i see a lot of thin and dmage hair.that time i really feel hopeless .I just feel like to cry cause my hair was so beatiful and straight .everyone in my class was just jealous of me becuase of my hair .my hair is silky ,straight by born .but now whenever i look them i cry a lot and think if everything gonna be alright???i lost many hair last in 3 months.even now i am losing hair everyday . if anyone know how to deal wth this problem plzz tell me. i juist want my hair become thin and grow back normally with less hairfall

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