What I hate most about Lupus....

[Paulajp]

Diagnosed in March 2016. There are lots of Lupus things that bother and frustrate me but the one that upsets me is the hair loss. I have spent the last 3 years searching for a hair loss solution....... Thankfully I found one and now that I look like me again, I feel able to tackle anything Lupus can throw at me.

[Bacardibabe76]

Hi

I think hair loss for women is one of the hardest things to cope with.

My hair loss is just rediculous, I used to have really thick hair and now I have only about 35-40% thickness left and even then I'm being over generous with my estimation. I have my hair up in a pony tail constantly but want my hair down and in a short bob again, but too self conscious to do it.

I am pleased you have found an answer, please share share your secret with me and the countless others 😀😀😀

L x

[Paulajp in reply to Bacardibabe76]

Morning BacardiBabe76, I completely agree, losing my hair has been so tough...... like you I had lovely thick, long curly hair which in a way defined me. It was always the first thing that people commented on so I really do feel your pain. One of the hardest things to recover from was my lack of confidence and feeling so self conscious all the time...... Lupus they say is a hidden illness but I didnt feel very well camouflaged having to go out into the world without my hair, I knew that people would know that I was ill and that made it worse. I am glad to say that I dont suffer that problem anymore and just recently I have had to 'out' myself to friends and family (and some complete strangers) about my natural hair loss ............ which has been quite fun because most of them were completely shocked. Its a minefield out there but thankfully bought hair products are getting better all the time so hopefully everyone who suffers will be able to find something that suits them.

PJP

[Lara4228]

Yes! That is wonderful!

Please do share with us your secret? I have lost so much and it won't grow back. If there is a solution for this, please share!

[Paulajp in reply to Lara4228]

Hi Lara

I dont have a magic formula to make hair grow back just a lovely 'real human' hair clip in piece which is the best I have found (I have a drawer full of the ones that didnt make the grade). I am wearing it in the photo on my original post (I lost a lot of hair on the top and crown of my head) and its such a natural and lightweight piece I dont even know I am wearing it.

PJP

[Author_ink]

What hair remedy did u find? Lupus took all the edges off my hair. Im now getting bald patches. I have dread locks which i have had for 20 months. I do have strong hair and put my dreads in a style that hides most of my hair loss. That is the worse thing about lupus. Ur hair dont look bad. I suffer from joint pain and severe fatigue sleep loss

[Paulajp in reply to Author_ink]

Hello Author

I suffer from all those horrible life disrupting things too and its complete pants!!! But as you say, my hair dont look bad and that has helped me to cope with all the other nasty things we have to put up with.

PJP

[Blizlee]

Would love to know your secret.....my hair loss is so bad, so many bald patches that i have no choice but to shave it off and cover it in a colourful head scarf! .

[Paulajp in reply to Blizlee]

OMG Blizlee, that sounds awful for you but there are other options I promise...... please get in touch if you want to know more, I could write a book on hair loss solutions both good and bad.

PJP

[Paulajp]

Happy to share, don't want to break any rules so I will PM you all. 😇

[smudge1980]

Don't wish to be rude Paulajp, but if your promoting a company, please don't pm me.

[Paulajp in reply to smudge1980]

Not sure I can pass on a solution if I dont let you know who sells it..... but as you hadnt asked I had no intention of telling you through PM or otherwise. Hope that suits.........

[smudge1980 in reply to Paulajp]

Suits just fine

[whatsit in reply to Paulajp]

Hi Paulajp I would like to know company, , at wits end with my hair

[Paul_Howard Partner LUPUS UK]

Hi Paulajp ,

I'm really pleased to hear that you have found a solution that works for you and gives you your confidence back

If you want any more information or advice about hair loss in lupus, we have an article which we published on our blog earlier this year. You can read it at lupusuk.org.uk/coping-with-...

[Cann in reply to Paul_Howard]

Yes, I think the best advice is to deal with the stress of hair-loss to start with and then find a good head dress, piece or wig. You can spend a fortune on hair regrowth products and then have the stress of no money left! I feel companies actually play on our vulnerability. The lupusuk.org.uk website information is the best you will get, I feel.

[Tiras]

👣👣👣👣👣👣👣👣👣👣👣👣👣

Hi:

I was diagnosed with lupus 4 years ago (SLE), the hair on my head is thinning but, for me I have lost all body hair. I have no hair at all from my shoulders down to toes. No underarm hair, no hair on legs, and yes I have no hair in private area either.

I am not sure if it is just lupus or medications or a combination of both that has caused the hair loss. I also have had to go barefoot for the last 2 years because of lupus rashes/blisters on my right foot. I have now gotten some what use to it but, I was uncomfortable at the beginning because I am a male. On the lighter side my wife says she would like have the body hair loss without the health issues.

I have found that

👣Lupus is different for all of us but, yet the same. That doesn't make sense but, then neither does Lupus👣

And

👣I will not let Lupus control my life👣

Yes, I have to go barefoot but I do what I want and I go where I want I just do and go barefoot.

Hope you do well!

👣👣👣👣👣Tiras👣👣👣👣👣👣

[Charlottelauren]

What did you use? im 21 and pretty much lost 3 1/4 of my hair due to lupus

[Author_ink]

That's what I hate mostly about lupus too.

[Author_ink]

I'm glad I have dreads. Its hard for lupus to attack my armored dreads. 😊😀 My hair line is completely gone. If u like weaves that's a good aternative