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Comment by Jules UK on June 18, 2013 at 2:22pm

There's been such good advice here. I do agree with you, Christie. I do yoga which helps with relaxation, and am still doing the 5:2 fasting diet that's supposed to shock the body into repair mode. Plus it helps keep my weight stable. Maddy, I tried to go gluten free and felt awful - dreadfully tired and light-headed. Maybe that's the problem?
Pam, I use Couvre above my ears. I've still got hair above that covers the baldness, except when the wind blows! It stays on well all day.
I've emailed Dr Harries about the steering group he mentioned at my last appt. No reply yet but he was on holiday until Monday. One thing he wanted to know was what areas of research we'd like funding to be directed at. Apart from 'make it stop!!' Of course...

Comment by christiekd on June 18, 2013 at 12:28pm

I find that the best way to cope with this disease is to do three things (in addition to the medications, of course): focus on the blessing in life rather than what this disease is taking away from me, try not to stress too much about the little day to day things that come up and exercise as much as possible. I have found that my hair loss began and increases during times of stress. So I try to take things with a grain of salt and enjoy all that is going on around me. I have to tell you that this is a switch from my normal personality. I am very type A and giving that up has not been easy. And some days I fall back into my old ways. It is my opinion that I actually benefit more from positive thinking than the medications I am taking. However, it is my hope that a combination of both is the best course of action.

I also never give up hope that this disease will stop progressing sooner rather than later. My hairline has changed drastically, but I am still at a point where it is manageable. So, I am doing everything my doctor is telling me to do in terms of medication while continuing to think positively about my situation.

Finally, another gift I give myself is exercise. I think that exercise is the single most thing that causes our body to function better as a whole. Plus it really helps me to live a more stress free life.

I hope this helps others. It has taken me 3 years to get to this point, and it does seem to be working for me as I am back to being in a little remission. My eyebrows have filled in a bit as well in the past few months.

Thank you all for being here too. I don't know anyone else with this disease, and it has helped a bunch knowing you are out there and going through the same thing.

Comment by PamW San Diego, CA, USA on June 18, 2013 at 11:10am

Maddy, I just sent you a friend request so that I can privately message you with my personal email. I think that once you have a cosmetic solution that you can embrace you will feel so much better. You should go on your vacation and have the time of your life. Hang on for Dr. Goh and cross bridges when you get there. About gluten - this disease is not an allergy to gluten. However, gluten does cause inflammation in our bodies and we want to cut down on inflammation. Stress is also a cause for inflammation. Try to distract yourself so that you are not thinking about your hair.

Comment by Maddy, California, U.S. on June 18, 2013 at 10:06am

In reply to Pam W., I go to see Dr. Goh this Thursday morning. I hope she will have some ideas for me. These new symptoms of fatigue and light-headedness just sort of crept up in the last 10 days or so. I have changed my diet...started wondering if I was allergic to gluten...so maybe I'm not eating enough, or maybe it is depression, I don't know. I see my therapist this afternoon and yesterday I went and had a bunch of blood work done, but won't have the results for a couple of days (I do see an endocrinologist every year to check for thyroid and other issues, but in the past everything has come back normal). Anyway, the whole thing is pretty stressful, especially trying to come up with enough energy to go go work every day and juggle all these doctor appts.

I am also thinking about buying a front hair piece, just in case this continues to get worse. I went to see a lady last week who makes pieces for people with cancer and alopecia with real hair. She custom makes them. It was a good, but weird experience...one that I never imagined I'd ever have.

I feel so depressing all the time. I have a big trip coming up in a couple of weeks, one I have been looking forward to for many years, and now I can't seem to even get excited about it with all this hair stuff going on.

Anyway, thank you all for listening. Maddy

Comment by Rita - Canada on June 18, 2013 at 9:33am

In reply to Pam, I use Topik and another called Illusion which are tiny fibers that help to camouflage the thinned out areas of hair. Comes in a few color shades. However, since I wear bangs, I don't sprinkle it on directly at the front but it works for me where you part your hair.

Comment by Celia on June 18, 2013 at 5:09am

Welcome Pam - sorry you have this awful FFA too. I can recommend eyebrow tattoos - they make such a difference ! x

Comment by Debs on June 18, 2013 at 3:17am

PamW, yes it is a huge relief to have now been wearing wigs to work for 6 months and for it to be something I have incorporated into my daily regime. I don't wear wigs all the time. I use buffs mostly when I am not working and sometimes a scarf tied round my front hairline like a headband. I do of course want the hairloss to stop because the more hair I have the easier it is to just use buffs etc.. when I can get away with a casual look.

Pam (in the UK) you can get top hair pieces (toppers) from online wig stores int e UK but I would go to a wig salon and try a few on just in case you don't like the way you have to attach them; clips, glue, tape. I depends how much money you want to spend as to what top hair piece you go for. If you friend me on this site I can give you more details. XXX

Comment by Pam on June 18, 2013 at 2:46am

Yes I am the Pam from the UK and a new member!
In reply to Liz, my dermatologist based in Bristol was reluctant to prescribe oral steroids, as he said the side effects were too great. He gave me a topical steroid cream, Synalar, to use at the front of my scalp around the affected area. I do not really think that it has been very effective though, as the hair is still receding, and the scalp looks shiny.
Any advice from other members welcome as to where to go for a good hair top piece in the UK?
Also, has anyone tried cover up masking products such as couvre, or toppik? What is their feedback?

Comment by PamW San Diego, CA, USA on June 17, 2013 at 11:18pm

Maddi, did you get to meet Dr. Goh? What did she say? Try to hang in there. Tomorrow will be better. Your symptoms sound like there is more going on with you. Could you be diabetic or have thyroid problems?

Welcome to Pam... I think this might get confusing. I am PamW. I think you should look into a topper. It just clips on and blends with your hair.

Liz, I think you could buy some pretty nice wigs for that money, but I know the feeling of wanting to try everything.

I think for all of us our biggest fear is having to wear hair. Deb is so brave and has just embraced wearing hair. Deb, are you calmer now knowing that you can pull it off?

Question for the group - does anyone get really, really red cheeks on their bad days?

Comment by Liz on June 17, 2013 at 4:39pm

Hi Rebecca. I was prescribed oral steroids for 8 weeks because I was losing my hair at quite some speed.
Last Thursday I was prescribed some medication by the dermatologist and have since found out that it's going to cost me £200 every 6 months. To be honest from what I read on here I wonder if medication does any good at all. We all seem to continue losing our hair, despite pumping our bodies full of drugs. The fact that we have this condition in the first place suggests to me that we all have sensitivities to something. If we then pump strong medications in to our body, I wonder if we are doing more harm than good to a system that is already struggling. Perhaps we are all grasping at straws , because it's better to take medication and live in hope than to give in and see what happens. If we are all going to wear wigs eventually why take the medication anyway? Sorry if I'm being controversial but this is how I feel at the moment.

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