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Honesty about alopecia
I would like to ask a general question, and get your opinon, to all alopecia sufferers. I just had a huge row with my daughters father about how to deal with our daughters Alopecia.
She is 6, I want to take the honesty approach. I tell her all, and don't hide anything from her. He tells her everything is fine and her hair is growing back, which it isn't. He thinks we should be "positive". I think we should be honest. (we are separate).
She lives with me, and everyday I see her hair falling out, and everyday she sees her hair falling out, so how can I tell her that her hair is growing, when she is losing it at an alarming rate?
I believe that if I am honest with her she can prepare herself and get used to the idea, it is the 3rd time in her life it is happening.
What is your experience, he thinks I am being mean by telling her the truth.
My stress levels are sky high right now.
Replies to This Discussion
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Permalink Reply by Lisav on
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Hi my daughter is 10 years old and was diagnosed with Alopecia a year ago. She had hair down to her bottom and She lost it all in six weeks. To say I was in a state of panic was an understatement. Then in January of this year she lost her eyelashes and eyebrows. I understand all these replies suggesting honesty and I get it but in the first few weeks a woman I trust very much and who works as a therapist told me that I had to believe and make my daughter believe that her hair would come back. That the mind is very powerful. I have never lied to my daughter, she knows she has Alopecia and she knows what it is. She knows that some people do not get their hair back but I have told her I will do everything she wants me to, to get her hair back and that I believe we are going to beat it. I have given myself one more year to try to find a none harming cure (we are currently using diet, supplements, Chinese medecine and she has had some sessions of micro physiotherapy) before I fully accept. She has some regrowth on her head, eyebrows and eyelashes. I do not force my daughter to do anything and I tell her that I am trying to get her hair back for her not me or my husband. She decides with me on the treatments we persue, it is her condition. She knows that we love her just the way she is and I have worked over the past year on making her as strong as possible for what the future holds. My husband and I did deal with it differently in the beginning and it put a strain on our relationship. He became consumed with trying to fix the problem and despairing at his inability to achieve this. Whereas I kept everyone going and found practical solutions for the problems that arose. There was immense stress and much as we tried not to let it affect us all, it did. Unfortunately I think you have to go through this and come out the other side, without trying to hide your stress. Your daughter will know if you are faking. Time really does heal. We are all so much better now, my daughter is psychologically extremely good and we have all come to terms with the disease. I am not agreeing with your husband at all but just trying to give another angle. Good luck!
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Lisa, I love your outlook and attitude and I believe that you and your daughter will beat the disease as well. I too have tried supplements, paleo diet, and many other alternative treatments but I need to focus on the mental mindset of it being possible for my hair to grow back. I really think you're onto something here and I don't want to give you false hope but I really believe you're on the right track. I worked with a holistic doctor too and they said I had a parasite called blastocystis hominis, which parasite did your daughter have? For my heavy metals test, we did a "provoked" test with a chelator and I had high levels of thallium but that may be just because the test was provoked (it draws metals out of you). I am trying a treatment now called Squaric acid, it's topical immunotherapy. It tricks the immune system so it attacks the acid and not your hair. It's harmless and something you could look into after you pursue a holistic treatment for your daughter. The body can heal if we prove it everything we need it to. Thank you for reminding me of that and helping me refocus the way I look at this disease. Best of luck to you and your beautiful daughter. Pls keep me posted and I will certainly do the same.
Regards,
Jason
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Thank you Jason for your kind words.
It was your post on mayo's blog that prompted me to start getting involved on Alopecia World. I have never been on a forum before so it is a bit of a learning curve for me. I don't know what parasite my daughter had, sometimes there is just too much information for me to take in. They have told me it is gone now and since treating it, her hair has stated regrowing, but I also took her away to the sun for 5 weeks, she is fast progressing through puberty and taking Chinese medicine so it could also have something to do with any or more of these. Keep focusing on the positive and best of luck to you too. Keep me posted on the squaric acid!
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