University project - life lessons and positives of having alopecia

Hello! I'd love some feedback on a few questions related to my university project. I'm entering a live competition with Adobe to create a series of 3 posters / prints considering these points:

  • What are the positives you've found in having alopecia?
  • What do you wish you'd been told, and how would that advice have affected the course you've taken to the here and now?
  • What life lessons have you learnt that you wish you could tell your younger self?

I have 4 weeks to have final designs, and I'd really love to create extra prints for alopecia charities / events to celebrate and spread positivity.

Leanne, x

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Permalink Reply by KiraC on November 9, 2016 at 1:56pm

1. When I got it the first time at 15 I would have wished to get advice or contacts to others in the same situation. It was back in the 90ties so ofcourse places like these we´re not so common.

2. Having alopecia keeps me grounded to what is really important in life. Without any hair I feel more motivated to work on my physical appearance and making sure my body is healthy and in a shape I feel good in. Ofcourse also turning inwards and making sure that I don´t judge others on appearance, behaviour etc.


In a weird way I also feel more confident now than I ever done before. I think the reason for that is that I have kids now and the most important lesson I can learn them is that different is normal and you should not judge too quickly.

Plus its great to be able to change hairstyles when I feel like it ; )

3. My no.1 lesson would be to work with my self-esteem and not let appearance affect that. I had alot of issues with the way I looked when I was younger and had hair. Just not spending so much energy on looks would have saved me alot of anxiety.

(had Alopecia Totalis when I was 15-17, Alopecia Areata 18-34 and now Alopecia Universalis since a year back at 35)

Permalink Reply by Zimrie on November 9, 2016 at 2:15pm

If you think you might lose your hair, you should cut samples and save them.   You should have samples from the inside and the outside.  You can cut samples without leaving a visible mark if you do it soon enough before it all starts to fall out.  

My early symptoms included dents in my fingernails and little skips in my eyelashes that I thought nothing about.    If I had known that these were serious symptoms, I would have gone out of my way to avoid and cope with stress.   

Last of all, I have to warn you about people who pretend to mean well.   When I still had hair, I used to attract a lot of predatory females who wanted to control me by cutting my hair.    Unless you specifically agree to this and see it as a free service, it's just another way for them to try to mutilate you.  Some people told  me that I had beautiful hair and asked me to never cut it and this make it  obvious that for the others that their demand to keep on cutting it until it was up to my ears was a fiendish pastime.     You have to do a total avoidance of people like this and tell them your hair is fine the way it is. 

Permalink Reply by Dorothy on November 9, 2016 at 2:34pm

§  What do you wish you'd been told, and how would that advice have affected the course you've taken to the here and now?

I wish the doctors would have been honest with me and told me what the name of what I had and that there is no cure so I would not have kept going to doctor after doctor for 25 years trying to get an answer so I could work on accepting my fate and learn to love me again.

§  What are the positives you've found in having alopecia?

I think I have learned to accept the less than perfect in others, that we all have our own struggles whether you can see them or not.

§  What life lessons have you learnt that you wish you could tell your younger self?

Eventually I would get used to AU, I learned I am stronger than I thought and I deserve love and respect from those around me or they need not be around me.

 

Permalink Reply by SabineTawni on November 9, 2016 at 5:35pm

Dorothy, Most likely the doctors did not tell you (or me) as we were an easy way to fund their 401Ks or what retirement plan they have!  Why they are treating this disorder as though it is an external condition is beyond me (except for the money).  Alopecia areata is an internal disorder.  Something has caused the immune system to become confused, especially when it starts late in life.  The real cure will come when the medical profession finds a way to RETRAIN the immune system--not SUPPRESS it, which only causes much more serious problems.  At least it did for me.

Permalink Reply by tuesdayd on November 9, 2016 at 4:16pm

I wish I had been told that I would always have alopecia. I wish they had told me not to get too excited when it starts to grow back because whole new patches will start to appear elsewhere and the false sense of hope was devastating. I wish someone had told me how grossed out people would be when I showed them my bald patches. I wish someone had told that Rogaine was pointless and would never actually help before I wasted money filling my prescriptions. I wish people hadn't suggested that it was my diet - it was not my diet! I wish people hadn't made me feel like such a freak for losing my hair.

What are the positives? The ONLY positive is that I found a man willing to do a "Spot check" for me. He helps me braid hair over the bald spots. He helps me find new sports and he helps me to not freak out as much about them. The ONLY positive about alopecia is that I learned how fucking amazing my boyfriend truly is. There is nothing positive about alopecia. I feel like a freak and I hate how I never know when my hair will fall out.

Life lessons for my younger self? Buy some wigs, you're going to need them. Also, learn how to French braid!

Permalink Reply by Joan on November 9, 2016 at 4:26pm

I wish I had been told that it wasn't necessary to take 3 biopsies in the same area close to the the hairline above my forehead--I now have quite a baldspot there. My second doctor said she wouldn't have needed to take any biopsies, since it was obvious by the pattern of my hair loss that I had FFA. (It may be a mute point soon, since my hair loss is slowly progressing upward.)

The best positive, I believe, is that I have become much healthier since I've been diagnosed with this permanent hair loss. My diet is way better; I exercise much more; I take more natural immune system boosters, such as vitamins, minerals, and a turmeric/black pepper mixture; and I have a wonderful therapist. [I'm 63 and am on no medications except the topical lotion betamethasone dipropionate for my scalp, which doesn't appear to make a difference.] My family members have been very supportive. I feel very blessed to be recently retired, enabling me to babysit my 6-mo.-old granddaughter full-time, and be able to laugh all day long.

I wish I could tell my younger self to take more time to play, rest, and be with loved ones, instead of being such a perfectionist/workaholic at my teaching job. I am so grateful for all the motorcycle rides I've taken with my husband after we became empty-nesters! [Having less hair will actually be a lot more comfortable in a helmet!!]

Permalink Reply by Tina S on November 11, 2016 at 5:43pm
Hi Joan:

I have been recently diagnosed with FFA and am finding your post, as well as the comments of others with FFA to be very informative. My dermatologist was experienced enough to diagnose my FFA, but I don't feel she has the depth of experience that someone living with the condition can offer. Would love to learn how you developed your current health protocol and how well it has worked for you.

I, too. am 63 and using the same topical lotion and receiving injections into my scalp every six weeks (two sets so far). Want to do all I can to stay healthy and positive.

Would love to hear from you!

Tina
Permalink Reply by Joan on November 14, 2016 at 2:18pm

Hi Tina,

Thanks for your response. I actually found a lot of useful information from others on this support website, specifically referring to Jacqueline at her Deep Roots at Home blog. She has a recipe for golden turmeric paste that I take three times a day for inflammation. I take an aloe vera capsule as needed for acid reflux. Other than that, I pretty much take standard vitamins: a women's over 50 multivitamin, vit. D3, calcium, vit. C, flush-free niacin, glucosamine-chondroitin, co-Q 10, fish oil, and red yeast rice. My cholesteral test 2 weeks ago was very good--especially a big gain in the good kind. I have to mention that I've eliminated sugar and grains from my diet after I hit 200 lbs. 6 years ago. I now stay around 165, which is still high, but I hope I'll lose more weight after I get on my CPAC machine this week for my recently diagnosed severe sleep apnea. I'm struggling to give up all soda, coffee and alcohol, since they greatly affect my acid reflux, among other things, but it's really hard with a lot of company, which we frequently have.

I have to go, but hope to be in touch later.

Joan

Permalink Reply by Tina S on November 14, 2016 at 8:02pm
Thank you, Joan! Really appreciate your willingness to share your health routine. I hope to incorporate some of your recommendations. So pleased to read that you are doing so well!

Tina
Permalink Reply by Joan on November 17, 2016 at 11:59pm

Glad to be of any help, Tina. . .just wanted to add that I recently changed all my salt to Pink Himalayan, which claims to have over 80 trace minerals. I first went to the doctor for hair/scalp issues due to a rash my beautician discovered. The doctor said to stop coloring my hair. Since then, I've noticed a change in my at-first solid white root color to more silvery mixed with my former dark brown color.
I also take a refrigerated probiotic first thing each morning plus a cup of plain whole milk Greek yogurt or kefir in a smoothie* later in the day. I've replaced all butter and vegetable oil with unrefined coconut oil or extra virgin olive oil and use fractionated coconut oil as a face/body/hair moisturizer.

Best wishes to you, Joan

*1 c. frozen fruit, 1/2 c. 100% cranberry juice, 1 c. kale, 1 c. yogurt or kefir, 1 t. psyllium husk, 1 t. plain gelatin (good for nails and hair), 1 banana, liquid Stevia to taste

Permalink Reply by Shaina on November 9, 2016 at 5:11pm

1. I wish I would've been told that hair is pretty, bald is beautiful but patches compliment no one.

2. I've become more confident since going bald and this confidence allowed me to find love. Imagine that, without even eyelashes to bat at him! :) 

3. I wish I could've told my younger self that there isn't a right way to respond to alopecia, just the way that's right for you. It's brave to be bald but it's not a defeat to cover up either. It's nice to educate but no one has the right to know your medical condition(s). Nothing about that process is shameful. 

Permalink Reply by JessicaStinkle on November 9, 2016 at 9:14pm
Very well said, I love #3.

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