Twinmom Posted August 9, 2010 Share Posted August 9, 2010 (edited) Happy, amazing update in post #24! My beautiful, Hispanic DD11 has just been diagnosed with vitiligo. She is losing the lovely brown color of her skin in patches, most prominently right now around her mouth and fingers. Left is an extremely (overly so) white skin tone with an irregular border. There are treatments that vary in effectiveness, but no cure...it is believed to be an autoimmune disease. If you don't know what vitiligo is, Michael Jackson had a severe, universal form of the disease. In most cases, vitiligo is permanent. DD has already suffered so much that this blow is particularly hard to take. She was abandoned by her birth mother (we know who and where she is but she ignores all letters that DD sends), adopted cross-racially into a white family, probably is FAE, suffers from extreme SPD (the sensory avoidant kind), required tx for a visual processing disorder that set her back in school, has a rampant anxiety disorder, suffers from huge, public panic attacks (yes, we medicate), has learning disabilities, lives with two little brothers whose sensory-seeking SPD drives her absolutely nuts and is terribly insecure. We've worked extremely hard with her over the years and she has been improving so much...enough so that we have indulged her desire to try returning to school in the fall. We thought that we were finally over the hump, so to speak, and that she finally could have the life she deserves. Then, this. One thing (among many other less visible attributes) that she has had going for her is that she is lovely...really beautiful. Gorgeous, long, brown and wavy hair, big, deep brown eyes, tall and willowy figure, a beautiful, rosy-brown tone to her skin. Not sure that she knows it, but it is there and it does improve the way people see her even when she is sometimes acting out her internal struggles. In an attempt to help her value her heritage, we have always emphasized that her brown skin was lovely and to be envied. Now, that is being taken away from her. When people see her, they say, "what is wrong with her mouth?" or "why does she look like that?" or worse, "she needs to wash her face" or "why is she dirty?" For a Hispanic child living in a white family, the implications are worse. Prejudice already exists, now I'm expecting things like..."are they rubbing off on you?" or "you aren't really Hispanic and now it shows on the outside!" etc. She is entering adolescence already insecure...to have to deal with this may simply be devastating for her. I am a Christian and my faith has sustained me through all of DD's struggles. I had just started to let myself believe that she was going to be okay now...that God was working in her life through all her struggles and that she would continue to improve. I truly never saw a disfiguring disease coming...especially not now. In the scheme of things, I realize that it is physically not a serious disease and that she will remain fine and healthy. It is her self-image and the reaction of others that worries me. She will have to find a special way in the world...in some ways, she'll have the privilege of getting a jump-start on recognizing that man looks on the outward appearance but God looks on the heart, but in other ways I know that she will struggle socially. I'm trying not to be mad at God for that "just one more thing" that she has to face in her young life. Basically, I'm grieving and thank you all for being here for me to write to at 4:45 in the morning when I can't sleep for worrying! If you are the praying type, please pray for my child. Her name is Brooke, and she is lovely no matter what happens to her outward appearance! Edited August 10, 2010 by Twinmom Quote Link to comment Share on other sites More sharing options...
Jyniffrec Posted August 9, 2010 Share Posted August 9, 2010 Oh, Jennifer, what a blow! I am so sorry that she has to deal with another layer of emotional pain. I will be praying for her and for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Renee in NC Posted August 9, 2010 Share Posted August 9, 2010 :grouphug: I am so sorry that your dd has to deal with all of this. I pray that a solution can be found to soften the blow. Quote Link to comment Share on other sites More sharing options...
Hockey Mom Posted August 9, 2010 Share Posted August 9, 2010 I'm so sorry for your poor DD. :( Forgive me of my ignorance, but is there any type of makeup available that would help cover up the patches? Or would that make it worse? Not that she should be ashamed of her disorder at all! And I don't normally advocate for 11 y/o's to wear makeup, but perhaps that would make her feel less insecure? Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted August 9, 2010 Share Posted August 9, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
samba Posted August 9, 2010 Share Posted August 9, 2010 Jennifer, My dd (almost 11) was diagnosed with vitiligo approx 2 years ago. At first it seemed like too much...our ds9 has Down Syndrome. If you'd like to pm me I'll share what info I can. :grouphug: Carolyn Quote Link to comment Share on other sites More sharing options...
homeschooltoone Posted August 9, 2010 Share Posted August 9, 2010 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted August 9, 2010 Share Posted August 9, 2010 :grouphug: I'm praying for your daughter, for you, and for your family. Quote Link to comment Share on other sites More sharing options...
ourjourneys Posted August 9, 2010 Share Posted August 9, 2010 Beauty is not in the face; beauty is a light in the heart. -- Kahlil Gibran Keep her surrounded by positive friends, those who treasure her friendship. Many prayers and good thoughts are being sent your way. Quote Link to comment Share on other sites More sharing options...
ourjourneys Posted August 9, 2010 Share Posted August 9, 2010 I just remembered: I was a nanny years ago to a little girl who had just been diagnosed with diabetes in 2nd grade. She had to test her sugar level and take shots 2 times a day. She hated it and asked me why would god do this to me? My answer was, "Maybe god knew you were strong enough on the inside to handle it and now you will be able to help others who may not be as strong." She smiled and always had confidence with that reminder. Sure enough, in school she met with other kids who were upset because of their situations and she told them the same thing :) I personally have experienced this idea as a child with other situations. I look back on things that I have gone through and it has just made me a much stronger person. I have been able to talk about my situations with other teens and found out that they had similar experiences and it was VERY healing. Quote Link to comment Share on other sites More sharing options...
i.love.lucy Posted August 9, 2010 Share Posted August 9, 2010 I'll be praying for her and your family!:grouphug: Quote Link to comment Share on other sites More sharing options...
RamonaQ Posted August 9, 2010 Share Posted August 9, 2010 :grouphug::grouphug::grouphug: Prayers to you all as you deal with this new diagnosis, and figuring out how to help your daughter with this. It is heartbreaking watching our kids go through these big struggles. I have an 11yo son, it is such a very fragile age, too. Quote Link to comment Share on other sites More sharing options...
Amanda's Mommy Posted August 9, 2010 Share Posted August 9, 2010 I normally think 11 is young for make up but in this case it might help at least with the spots on her face. I use Bare Minerals on my spots. Also make sure to use a really good sunscreen. When the spots burn they really hurt. And it doesn't take long for them to burn. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mabelen Posted August 9, 2010 Share Posted August 9, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
merry gardens Posted August 9, 2010 Share Posted August 9, 2010 ... In an attempt to help her value her heritage, we have always emphasized that her brown skin was lovely and to be envied. Now, that is being taken away from her. When people see her, they say, "what is wrong with her mouth?" or "why does she look like that?" or worse, "she needs to wash her face" or "why is she dirty?" For a Hispanic child living in a white family, ... There was nothing wrong with you teacher her that her brown skin was lovely, but perhaps you went a bit far by teaching her skin color was to be envied. Now you have a chance to teach her that people can be beautiful no matter what their skin color. And, more importantly, what's on the inside counts more than what we look like on the outside. Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 9, 2010 Author Share Posted August 9, 2010 Thanks so much for the encouragement and prayers! I feel much better about things this morning. The light of day and a little sleep makes a big difference! It's still upsetting, but it doesn't feel like the end of the world today. I appreciate hearing from those who have vitiligo! It's nice to know there are people to whom I can ask questions and learn from. I'd love to have anyone who has successfully treated their vitiligo in some form or fashion. What worked? How much did it work? How expensive was the treatment? Also, did having vitiligo have a negative impact on your life? If so, how did/do you deal with it? How can I help DD? Thanks so much...it means a great deal to me to have other parents to vent to safely! It's tough having things happen to your kids. I'd much rather deal with illnesses or setbacks myself than to have one of my kids have to suffer! :grouphug: Quote Link to comment Share on other sites More sharing options...
catz Posted August 9, 2010 Share Posted August 9, 2010 My mom has had vitiligo her whole life. Really, it hasn't effected much for her. She's in her mid 60's and loves her grandkids. She leads an active life as a retiree. She was diagnosed as a teen and has never taken anything for it. I'm sure it feels awful now, but she has more options being diagnosed now and it's not the end of the world. All the best to you and your daughter! :001_smile: Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 9, 2010 Share Posted August 9, 2010 We don't have all the same struggles you do but my kids, esp. my 14dd have multiple, multiple issues---and are all adopted through foster care. My husband's uncle has this. He is full blood Native American. It is mostly on his arms---at least from what I see--then again I don't know if I have ever seen him in shorts. For him, it is just part of who he is. We don't give it a second thought. I do realize though how adding just one more thing to a child that struggles so much can be difficult. Sorry I don't have any answers but I do know where you are coming from. I told the nurse at the neurologist's the other day that I would take the seizures, mental impairment, mito issues, growth delays, and mental illness issues if we could ONLY get rid of the stuttering. That is the one issue that is the straw that breaks the camels back. HOpefully others are more helpful. Quote Link to comment Share on other sites More sharing options...
sands1978 Posted August 9, 2010 Share Posted August 9, 2010 :grouphug: We will be praying for your family... Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 9, 2010 Author Share Posted August 9, 2010 Sorry I don't have any answers but I do know where you are coming from. I told the nurse at the neurologist's the other day that I would take the seizures, mental impairment, mito issues, growth delays, and mental illness issues if we could ONLY get rid of the stuttering. That is the one issue that is the straw that breaks the camels back. Yeah, that's pretty much how I feel. It's funny, the thing that finally is the last straw. I just didn't see it coming, the timing is lousy and I just. don't. want. anything. else. Maybe irrational, but it is how I feel! We'll work our way through it, just like everything else. Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 9, 2010 Author Share Posted August 9, 2010 DD is pretty good at taking pills as she takes other medications. Don't know how she'd do with a big ole pill, though. She'd probably be willing to find a solution, though! I posted about this on the general board as well to try to catch anyone who has tried different treatments...so far I've not been able to find anyone who has tried UV treatments. Supposedly they can have as high as a 90% return of pigment, esp on the face. Anyone tried these? Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 10, 2010 Author Share Posted August 10, 2010 I'm absolutely, totally floored at God's goodness! In response to learning of the vitiligo, DD's birth mother contacted us! No response from her in 11 years of trying, and now she wants to call me! Remember how I mentioned that DD had been essentially abandoned by her birth mother...that we know who and where she is but that all attempts at contact had been ignored? Well, in my grief I got a bit impatient with this situation and contacted her on FB, something I would normally not do. I told her about the vitiligo, DD's other issues and our doctor's concerns re a lack of medical history background on other autoimmune diseases, etc. I literally begged her to please contact me and help me provide the answers I needed. She contacted me last night and asked for my phone number, saying she'd love to help in any way she could. You could have seen my jaw hit the floor! :svengo: We've been praying for contact for 11 years and I'd nearly given up hope. Now, we have a crack in the door! DD's feelings of abandonment by her birth mother have been more painful than vitiligo could ever be...now, at the very least I can tell her that she cared to help when DD was in trouble. And, if we're lucky, a dialogue can begin and DD can have some sort of relationship with her. Thanks, God! Quote Link to comment Share on other sites More sharing options...
elegantlion Posted August 10, 2010 Share Posted August 10, 2010 I'm absolutely, totally floored at God's goodness! In response to learning of the vitiligo, DD's birth mother contacted us! No response from her in 11 years of trying, and now she wants to call me! Remember how I mentioned that DD had been essentially abandoned by her birth mother...that we know who and where she is but that all attempts at contact had been ignored? Well, in my grief I got a bit impatient with this situation and contacted her on FB, something I would normally not do. I told her about the vitiligo, DD's other issues and our doctor's concerns re a lack of medical history background on other autoimmune diseases, etc. I literally begged her to please contact me and help me provide the answers I needed. She contacted me last night and asked for my phone number, saying she'd love to help in any way she could. You could have seen my jaw hit the floor! :svengo: We've been praying for contact for 11 years and I'd nearly given up hope. Now, we have a crack in the door! DD's feelings of abandonment by her birth mother have been more painful than vitiligo could ever be...now, at the very least I can tell her that she cared to help when DD was in trouble. And, if we're lucky, a dialogue can begin and DD can have some sort of relationship with her. Thanks, God! :grouphug: That brought a tear to my eye. Prayers and thoughts for you and your family, and for the heart of your dd. Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 10, 2010 Author Share Posted August 10, 2010 :grouphug: That brought a tear to my eye. Prayers and thoughts for you and your family, and for the heart of your dd. Thanks, El! I know you know how much this means to me, so I'm so glad you saw the post! I appreciate your prayers so much!! :D Quote Link to comment Share on other sites More sharing options...
Lolly Posted August 11, 2010 Share Posted August 11, 2010 Thanks, El! I know you know how much this means to me, so I'm so glad you saw the post! I appreciate your prayers so much!! :D Somehow, I had missed all this. I will continue to pray for you and your dd. I'm glad some good is coming for her right now. :grouphug: Quote Link to comment Share on other sites More sharing options...
Twinmom Posted August 11, 2010 Author Share Posted August 11, 2010 You didn't miss anything, Lolly! It just happened, last two weeks. Quote Link to comment Share on other sites More sharing options...
rafiki Posted August 12, 2010 Share Posted August 12, 2010 . Quote Link to comment Share on other sites More sharing options...
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