Hair loss :O(: Hello everyone! I want to be... - LUPUS UK

LUPUS UK

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Hair loss :O(

lupylupus profile image
8 Replies

Hello everyone!

I want to be positive and help those of you who have lost hair.

I have been devastated by my own hair loss and it has caused me so much embarrassment for many years now.

It took me ages to face up to it and get something done because that was admitting to it and of course the cost, but now I have hair to die for!! However it is not all my own!! LOL!

I want to share this with you all because it has made such a difference to the way I feel.

I found somewhere called Rapunzel in Marlow, Buckinghamshire. You can find it on the internet.

They are so understanding and men are barred from entering the salon! They give you all the privacy you need.

I came out feeling like a film star!! (LOL again!)

I still have some hair left so they fitted a volumizer. It is like a little net cap that sits on your crown and they pull your own hair through it. Then they attach some of your own hair with little beads that can't be seen under the donated hair. Mine is European hair which is important to match your own if you are European.

I go back every 6 weeks or so to have it adjusted and it costs about £30.00.

The cost of the volumiser was about £500 and well worth saving up for. I know it is expensive but I don't regret it at all becuse I wash it and style it just like my own hair.

My dermatologist wrote a letter to them to say I needed it for medical reasons and they took the VAT off it (so that saved quite a bit.)

If anyone from Lupus UK reads this and wants to print it I would be very happy for them to do so, so that it can help others.

Margaret x

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lupylupus
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8 Replies
witch2 profile image
witch2

That is brilliant news I have a relative who has suffered hair loss and this information is so helpful x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Margaret,

We will definitely bear this in mind if anybody asks for advice for dealing with hair loss in the future. Thank you for sharing it with us. I'm glad that you are feeling fabulous again.

Welshexile profile image
Welshexile

Hi Margaret, fabulous news, I must admit it's taken me over 20yrs to get used to my almost total lack of hair, NHS wigs were soooooo awful back in the 90's there was no way I was going down that route. I have since obtained one from the lovely ladies at Selfridges Specialist Wig department in Birmingham - but my head's so used to being uncovered I find I overheat within 10 minutes - I now go for the cheapest option of a multitude of Buffs & Beanies ;-)

NatashaW profile image
NatashaW

Thanks for this! I'm losing my hair in patches and at 41 find it very distressing but now I know there's someone to help! Thank you x

lupylupus profile image
lupylupus

Hello again! It's me......

Thank you for all you comments above. I have read them all and I am sooooo pleased I can pass on my tips! The good thing is that this is not like wearing a wig as it feels just like your own hair and you dont get hot in it.

Here is the contact info for Rapunzel:

rapunzelhairextensions.com

rapunzelhair@btinternet.com

01628 481 388.

12 Chapel Street Marlow, Bucks, SL7 1DD

I hear that some women travel from as far as New York to go there and long distances in the UK also.

I tried to attach a picture of me with my hair but it didn't work! I will try again soon.

Beleive me; I know how horrid it is to look in the mirror and see bald patches.

I first went to the GP well over 20 years ago and after several attemps of having blood tests for thyroid function and being told there was nothing wrong with me I gave up for years whilst feeling tired and exhausted. I never took a day off work because I thought I must be imagining it all or just getting old because I had been told I was in good health!

My husband was collecting my hair off the bathroom floor so I wouldn't notice it too much, and when I moved home my new GP spotted it immediately and I started treatment at the hospital. A bit late for my long lost hair which had dissapeared down the plug hole or into the vacuum cleaner! LOL!

After that time it became obvious as I ended up with a beautiful flame red spotty blotchy rash all over and the joint pain I had always complained about became much worse. I also have Sjogrens, Raynaulds and lots of the usual Lupus symptoms to boot. I really did feel ill.

The good news is that since I have been taking CellCept I have felt so much better and now I am completely off steroids and have cut down to one tablet of Plaquinil. So it's all on the up from now I hope and no more flares as I have decided it wont happen again!

I want to share that with you especially those of you who think it is never going to improve as I am sure it will just like it has for me, and I also have HAIR! it may not be all mine but nobody else but you knows about it!!!!! So dont tell anyone!! LOL :O)

Stay positive.

Margaret x x x

Thank you. My yougest daughter has hair that long that its past her knees and my eldest's hair loks like an afro and some stupid mum in playground asked if my daughter's hair was to make up for my tragedy - i swear they believe my bald/thinness is due to cancer! i just said not sure what you mean (came home and cried) will contact rapunzel and that can bemy gift from santa! thank you x

lupylupus profile image
lupylupus in reply to

Hi n7-manchester

At least there are many on this site who know how it feels to lose their hair. I fully understand how you feel and it is not nice at all.

If you go to Rapunzel you must be prepared to spend money unfortunately. The volumiser will look really good, but as your own hair grows it needs to be tightened and so you have to go back to get that done about every 4-6 weeks at £30 a time, depending on how quickly your own hair grows.

I have enough left to fit to the volumiser and I am hoping that I don't have a flare and lose more of my own hair whilst I am wearing it.

It is the best solution I know, but it is not perfect because of both the inconvenience of going back and forth and the cost.

I just wanted to be honest with you as I didn't want you to have any surprises.

I love my hair and if you have it done I am sure you will do too.

You will look tons nicer than that horrible mum in the playground anyway!!!!

Margaret x

charm81 profile image
charm81

Full Lace wigs are good as well. Just type it into youtube

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