Alopecia-Long Term Sufferers; Do you find studies exclude you?

Hi Good Positive People:)

Have you found that when you apply for studies on Alopecia of any kind, Areata, Totalis, and Universalis that if you've had the disorder for more than 5 years they exclude you from the study?  It almost makes me feel hopeless and like me having to live like this doesn't impact me or my life.  Why do they do this?

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Permalink Reply by janetparsons on July 15, 2018 at 7:06pm

i am from newfounland, have au for 44 years, i am now 64  years, it MADDENS ME! I TRIED THE CANCER SOCIETTY FOR A NIGHT CAP THEY WOULDN,Y EVEN LOOK AT ME,sorry foor the caps, it makes me soooo mad!! i suffer  more with thisdisease at least their hair grows back so i am with u all the way on this one.i also suffer  from fibromylagia and ostoarthritis, i think they r also auto immune. God bless us all.all the best feel free to drop me a line anytime   Sincerely Janet [ the newfie]

Permalink Reply by dreamscometrue on July 15, 2018 at 7:42pm

Stay positive Janet!  Someone is bound to hear us.  It is very frustrating and hard living and coping with AU, and it hurts a lot that we get passed over and ignored, because they feel ts not a death sentence, to them its just hair.  It's offending to think the medical establishment treats alopecians this way.  Sickens me more, really!

Permalink Reply by Leigh on July 9, 2018 at 3:25pm

These issues are some of the very reasons I made Alopecia the focus of my dissertation research.  Please consider sharing your thoughts and experiences or forwarding to anyone that might want to participate!

Hi friends!  Leigh McGinty, a doctoral counseling student at Trevecca Nazarene University, is conducting a study on the experiences of women with alopecia.  If you wouldn’t mind taking a few minutes to complete her survey, see below.  Thank you!

OPPORTUNITY FOR WOMEN WITH ALOPECIA TO CONTRIBUTE TO RESEARCH ON COPING WITH HAIR LOSS

  • You must be a female, 18 years or older
  • You must have been diagnosed with Alopecia
  • This study has been approved by a human subjects ethics review board
  • Confidential survey completed on a secure data-encrypted website
  • Takes approximately 15-20 minutes to complete
  • As an incentive to complete the study, you may choose to be entered into a drawing for one of four $25 Visa gift cards
  • For more information, click the following link OR copy and paste the link into your browser: https://www.surveymonkey.com/r/AlopeciaSurvey2
Permalink Reply by dreamscometrue on July 9, 2018 at 5:01pm

Thanks Leigh!

I did the survey and the questions were great and many hit to the point of what its like living with Alopecia day to day, but I do wished there were more questions about those of us who have AU, which many people dont acknowledge.  Its like some researchers have given up hope for us, and we hurt deep inside too.  Walking around living with AU is hard and God forbid if I ever go without makeup or a wig, people assume I'm on chemotherapy or near death.  Its very diifcult as a woman living with this disease as covering up to blend in is a daily challenge in life before I can even consider whats next for the day

Permalink Reply by Pamela on July 9, 2018 at 7:07pm

Yes very difficult. I have always had AU. It came back a couple of times but always returned to AU

Permalink Reply by dreamscometrue on July 9, 2018 at 7:45pm

You're lucky Pamela, mine never came back.  It took almost 10 years to lose everything and each year it got worse and worse until I was left with no hair at all.  Just until recently in the last 2 months, I've been on Humira, my daughter says she sees fuzz and dark little hairs all over my head.  So, its not a complete wash out but its not like I can go out wigless either.  I'm gonna wait and see what happens, and I may have to do another biologic

Permalink Reply by Pamela on July 9, 2018 at 8:34pm

I wouldn't call it lucky. It fell out completely in a matter of a week. It was 10 years before it came back only to have it fall completely 7 years ago again. In the last few weeks I have grown some brows and lashes. I will enjoy them for as long as I can. I also have peach fuzz on my scalp. I have no indication it will progress further. I have been on steroids for the last couple months. I've had a horrible skin  breakout. Another autoimmune issue. I will be off the meds Thursday of this week. After that all I can do is hope to keep the brows and little lashes.

Permalink Reply by Leigh on July 9, 2018 at 8:17pm

Very helpful to have your feedback...I hope to continue researching Alopecia (AA, AT, AU) in the future.  My study's results will hopefully suggest directions for future research projects and having your voice be part of this study will be provide great perspective.  THANK YOU!

Permalink Reply by dreamscometrue on July 9, 2018 at 8:52pm

My pleasure Leigh, I really hope your research project helps create change that so many of us need and look forward to getting the help we have sought for so many years and decades.  You're very welcome

Permalink Reply by cwincos on July 12, 2018 at 1:58pm

Drug companies want to get the best possible results in order to get the drug approved for alopecia. It can be discourage but don't lose hope.  Once the trials are done and the FDA approves the medication for that purpose, they it will be available to everyone.  One and only one of my white blood cell counts is on the low side of normal so I get kicked out in the screen process.  I actually think it better to wait.  They are messing around with dosages and now topical applications.  I would rather not risk the side affects. It will be all good in the long run.

Permalink Reply by dreamscometrue on July 12, 2018 at 8:34pm

I have AU and I also WAS diagnosed with RA.  But today after seeing a new rheumatologist, she doesnt think I have RA at, and she's not sure what is causing my problems.  I am taking Humira but was advised to get off of it.  I am getting chest pains that are very uncomfortable.  She ran new test on me to see whats going on, so I have to wait and see what the results are.  I spotted a few eyebrows today, dark ones, so that's good but, I dont think it'll last since I will be of the Humira

Permalink Reply by Moonbeam on July 13, 2018 at 3:26pm

I was just about to start taking Humira (hoping it might help the AU) but then I had a panic attack, when I was thinking about sticking myself with a needle, and worrying about side effects, so I canceled the medication. :(

I'm going to try methotrexate first, at a really small dose, and see what happens. Taking a pill is slightly, only slightly less scary for me. I'm going to start next week. I'm already starting to freak out about it. But my psoriasis rashes are starting to spread so I guess it's about time to try something, to get them under control. :/ It also seems like trying methotrexate will be the quickest way for my insurance to approve Xeljanz.

I'm sorry you are getting some side effects from the Humira. Chest pains don't sound good at all. :(

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