Alopecia World
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Yes, you can!
You Can Do It!
We are all on this forum for one reason... most people visiting here are just learning about "alopecia" and I have to say, the information found can come across as quite depressing (eg. nobody knows..., treatments may not work...). Talk about depressing!
I want to tell you that you can take control of your life and your treatment. I did so and had success (measured in hair growth).
As much as I don't want to sound "preachy," most of the posts here are preachy... about "acceptance." Accept that this is happening to you and you can do nothing about it... but you can be proactive and stop it as well. There are not enough success stories. I am a success story.
Here are the phases I went through:
1. Freaking Out! This phase is characterized by absolute panic and anxiety and the rush to "google" "alopecia". BTW- nothing good ever comes from googling/self-diagnosing a medical condition. Just "google-image" "shingles" or "warts" and you'll know what I am talking about. Not helpful!
Overcoming the anxiety is the first step. Many of us can identify a life event as a trigger. Then, that stressful event is exacerbated by some hair loss. We start running our tight fingers through our hair to see how much is falling out and become panicked. Then a bald spot. Then more panic.
2. Then there is the dermatologist appointment...
The truth is, if you have done any research on THIS FORUM, you are often more informed that your dermatologist as to treatment options. Do the reasearch here... read about success stories...
more tomorrow... about how I grew my hair back...
Replies to This Discussion
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Permalink Reply by Lori on
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Lenore your story is amazing!!! I am so happy for you. Your story is inspiring to all of us. I too have had this condition on and off for 10 years. My derm just tried dpcp on my arm and the right side of my head. I have a little blistering on my head. I'm hoping that means my body is accepting the dpcp. I hope and pray it works. After reading your story I am inspired to do more for myself.(exercise,eat right, think right etc.) Thank you for your story I will keep you posted on how I do with my hair regrowth!!!
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Permalink Reply by Kim on
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Hi Leonore...thanks for sharing. Please keep us posted on your recent successful treatment. Thank you!
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Permalink Reply by chris for hair on
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As I read all of the posts here I am reminded of my own journey with having Lupus for 37 years. At first I thought the doctors would help and medicine was the answer, then tried many alternative therapies, then started a campaign to change the way doctors treat people with chronic pain, then finally just gave in, got fat and did not move much at all.
Luckily life threw an even bigger challenge at me and I lost virtually all the support I thought I had, along with all my money and resources. At that point there really was no where to go but up and I started to exercise (forced into because there were 47 steps to my home and no one to carry everything up) eat less because I no longer could afford to feed myself and my dog (the dog won what little food we had)changed my belief system because I knew now I had to keep putting one foot in front of the other or succumb.
The bottom line to all this is that life is hard, so what? You just get through it, do the best you can, look for the open doors, and not be afraid to walk through them when you find them.
Today my life is the best it has ever been, I have finally learned not to keep looking for that miracle that never comes, wear hair, wear a few other physical enhancements I lost to my illness, not worry about what I can't change. Stay balanced, practice whatever your spiritual beliefs are, keep with positive people and live the best life you can whatever your circumstances.
People think that I am fine because I now have a successful business, train and ride horses, and stay very busy. Nothing has changed with regard to my health issues in fact things have gotten much worse. But for me, to waste whatever time I have left worrying about all the things that did not work out would be tragic. I choose to look forward, not back.
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Hi leonore
That's pretty inspiring stuff! Hope your hair stays for you.
Chris
What an amazing attitude....my daughter has recently been diagnosed with yet another auto immune condition ( Crohn's disease), she also has au, asthma, eczema,anaphylactic food allergies...as you will empathise life is not easy...but like you she keeps keeping on. Thanks for sharing your story, very inspiring for me.
Rosy
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Permalink Reply by Sue Bates on
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I'd be grateful for any advice and guidance. I've done the entire dermatology thing (have to say I felt I'd been referred to the wrong specialism as Alopecia is immunological not dermatological),but endured the steroids,minoxidil,PUVA,and even methotrexate. I guess this was,in part,an element of the journey I had to travel to enable some level of acceptance and contentment. Sadly nothing worked.
Since January this year,I've been taking reasonably high doses of vitamin d having done some research after viewing a YouTube VTR talking about "the real story on vitamin D".
Whilst I haven't experienced a miracle "cure",I have seen some re growth,and having been hairless for three years,this is something. I can't say for sure if this is as a result of vitamin d,but taking it is something I will continue with,as its not going to hurt me.
The sad thing is,we need research into causation and cure,but I'm doubtful this will happen,despite being a campaigner in the UK for government funding. I think pharmaceutical companies probably don't see Alopecia as a great profit making venture,so are content to plough research and finance into more profitable illness.
I'd really love to hear about anything out there which might offer help,particularly if it isn't harmful or toxic. This body has been punished enough.
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Permalink Reply by Sue on
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Hi Lenore, You are very inspiring.
I am hoping that you might share your experience of prednisone. How long were you on it and how much were you taking a day? And, what side affects you experienced. Also, can you tell me if you know of what consequences men have taking this long term. My son was prescribed this toxic stuff for his acne - the dermatologist took his eye off the ball and left him on 12.5mg/day for a year. The doctors i have seen continue to play down the affects and my son refuses to focus on it. He is booked in to have a mastectomy this year as a result. He has had glandular fever and golden staph which i suspect is also a consequence but i am really anxious to know if it affects mens' genitals, their erectile function and their sterility. My son refuses to have any tests for this and as was only 16 when he started this terrible ride - i don't think he has even had a sexual experience - he is now 20. I'm sorry that my enquiry is off track but it's not very often i get to ask someone directly who has experienced this terrible stuff. Any info you can provide, would be truly appreciated. Warm regards, Sue.
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Permalink Reply by MJ Wrick on
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I finally went to a dermatologist after 15 years of this. I DID know more than he did. I have a client who is a Derm & she honestly says there is just not enough knowledge out there to treat this successfully (get hair to grow back). She believes all you can do is proactively manage your health (nutrition, exercise, manage stress), and just prepare yourself mentally for fallout, because it's cyclical- it's gonna happen. My time and $ are better spent on new wigs than some of the docs.
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Yes, Listen to me very closely. Don't panic. You have to really calm your nerves literally. Something is going on in your life that is stressing you and your not totally comfortable like you want to be.
1. Start Going to sleep earlier. Relax as much as possible before bed. Try taking a bath before bed. Sea Salt baths 3 times a week also to cleanse your aura/ energy field/ mind. Trust me it works.
Drink some sleepytime tea, or Chamomile before bed. Your main objective is to get the deepest sleep possible.
2. Meditate- If your not familiar with it, don't worry. Just deep breathing into your Diapharm / stomach focus on the breath and don't think about anything. The more breaths you take the calmer you'll feel .. I like to do it while laying in bed and I fall asleep while doing it. I get maximum quality of sleep doing it. Tip. Deep Breath, on your exhale feel yourself sinking into the Chair,Bed. It make feel funny at first but its alright.
Say a prayer before you sleep to ask your Guardian Angels to heal you as you sleep.
2. Detox yourself, colon cleanse, hydrocolon therapy. take probiotics. It'll increase the absorption of nutrients into your body.
3. Eat as health as possible, reduce meat . Its very acidic. Always make sure you have vegetables and Fruit with every meal. Don't worry yourself about it.
The most powerful part of healing is your mind. you faith that your hair is growing back no matter what. If you have a spiritual connection to GOD, that's even better. It doesn't matter what religion you are. It all depends on your heart. Believe and Know that the Most High is healing in all aspects of your life and this hair situation is a learn tool for you. I had to realize this. I have learned so much since my hair came out, but I want my hair back now so I have to do what I have to, to get it back.
If your seek medical help, Stick to the Natural doctors. The western medicine is not designed to heal anything, they just go after the symptom and not the cause. .
Our bodies are designed to heal itself, we must put it in the right environment to do what it's designed to do! THAT'S THE TRUTH
Ask me any questions. and YES MY HAIR IS GROWING BACK.
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Loved your post about your positivity. How are you now? Did you maintain your health & positive progress?
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This is so true for me too. Started losing hair in May, have lost most of hair apart from the above nape area. But have regrowth now, in patches but seems to be growing how it fell out in patches... Hair is brown colour and there is a few grey ones... But at least its growing back.
1. I did sort my anxiety issues out
2. Increased my Vitamin B, started taking Vitamin B Complex, Pro biotics and Biotin did this help, I don't know but all I know its growing back
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So true, never give up and make sure you do your own research. I had AU for about 2 years and for the last 4 months my hair has been growing back. What worked for me was reduce stress and relax, and increase vitamin B12 and iron ferritin. Hair grows at the same rate that it fell out; I'm a quarter of the way to a full head of hair again!
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