Alopecia World
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Alopecia awareness project
Hello,
My name is Megan Lackie. I am a 21 year old student who has had alopecia for 7 years, started as areata and now I wear a wig and have lost most of my body hair. I am in my final year of my degree in film and media studies at the University of Stirling in Scotland. For my final project I am to make a short documentary on a topic of my choice. As we all know there is a severe lack of awareness around alopecia despite the many people who cope with this. I would love to use the opportunity I have in my studies to put together a project that would help raise awareness, both of the realities of living and coping with alopecia and also if at all possible the struggles those with alopecia face in getting real hair wigs on prescription from the NHS. I understand this second objective may be problematic or ambitious for a student project but I would really love to try.
I am creating this discussion to ask if anyone would be willing to help me in this endeavour, and if you would be able to spread the word regarding this project around your friends and contacts.
I am unsure at this stage what form exactly the project would take, if I would be looking to interview many people or focus on one person's story but if yourselves or anyone you know would be willing to participate in that sense it would be completely invaluable to me. (Identities can remain anonymous also).
Aside from actual interviews my main priority at this stage is just finding some contacts who may be able to help with information etc so any help in that respect is greatly appreciated.
This project is in the very early stages at the moment - the idea would need to be approved by my tutor and then we get put into groups and decide on one idea out of four ideas in the group for us to pursue. If my idea did not get picked as my group's final project I would still be endeavouring to make this film in my own time as I feel it is a valuable project that would help to raise awareness.
At the moment I ask that you let me know if you would be wiling to help out, either in terms of interview or providing information regarding your experiences and that you pass this information regarding the project onto any friends with alopecia or contacts you have.
Please contact me if you have any questions and I look forward to hearing from you regarding the project.
Many thanks and kind regards,
Megan Lackie
Replies to This Discussion
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Permalink Reply by Rose Marie' on
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Hello Megan
I would be happy to help in any way I can with your project. I would so love to see things change for those in the Uk and Scotland with regards to the NHS and what is available for people. There are some organisations that I think may be helpful for you as well.
Jayne Waddell is based in Scotland...she has alopecia and she is very active in the alopecia community there. contact her through her charity. Autoimmune Alopecia Research UK or look her up on facebook.
She will also be able to put you onto other groups that can help.
Rosy
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Megan,
Not sure which age group you are targeting for your project. I have had alopecia areata for the majority of my life. I would be willing to help you in anyway I can. I've worn the full gammit of hair prosthetics. Wigs, vacuum pieces, silicone etc.
Susan
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Hello Megan-
I don't know if I could be of any assistance--I live in the States. I have androgenic alopecia. What it odd about my story is that my alopecia was triggered by early menopause due to ovarian cancer. I am so lucky and so grateful to be alive--I was bald for a year from chemo and never missed my hair at all--I just wanted to survive the cancer. (I had been given a 25-40% chance of surviving 5 years...) Anyway, given that I am 10 years into remission, I myself wonder why it is SO hard to cope with the loss of my hair. (Unlike cancer losing my hair can't kill me....) But for me, dealing with hair loss is a daily struggle, both emotionally, psychologically and even financially. Here in the States, beyond initial diagnosis, the loss of hair is not covered by insurance. It is considered a cosmetic issue only. Wish my brain could come to terms with that....
I wish you well on your project and I think is it is wonderful that you are helping raise awareness. There is a theory that all great change is incremental in nature. To put it another way, every voice in the crowd demanding change matters. Thanks for raising your voice.
Cathy from Texas
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Permalink Reply by Sunflower25 on
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I would be happy to help as well. I'm from the states and I have AA.
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Permalink Reply by gill macgregor on
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Hi Megan
Late on last year I helped with some research for a PhDs student in Nottingham so I would be very willing to help you.
Gill
Ps I live in england
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When I crossed 40 Yrs. Of age, like many, I also started loosing hairs due to male pattern baldness (MPB) which runs in my family. Untill 45 yrs of age, I was quite complacent about my hairloss, I did not bother much, as I was sure that MPB has already set in and within next ten years, I will also become almost bald.But then I tried nail rubbing and today at the age of 51, my baldness is completely gone. Even my temples which were bereft of any hairs since the age of 20+ are now filling up. Amazing experience. I like to help people with my website www.balayam.com
My effort is absolutely for charitable purpose, believe it or not. I absolutely feel Balayam or nail rubbing exercise is the cure for baldness.
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Permalink Reply by Missellewoods on
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Hi meg
I'm happy to help!
-stephanie
Aa for three months /
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Permalink Reply by MamaDavis on
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I've been diagnosed for a little over amonth now and it sucks!!! Lol. Would love to see more awareness for this disease!
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Permalink Reply by Mel* on
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I would love to be of help. I was just diagnosed and I am losing my hair, eyelashes and eyebrows very quickly ! We need to raise awareness of this hidden disease because I am sick and tired of it taking over my life, our lives. It is stealing my hair but I refuse to let it steal the beautiful soul I have inside.
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