My 14 year old daughter was just diagnosed.

Hi Everyone

I am new here, my 14 year old daughter was just diagnosed about 3 weeks ago. We had noticed white patches on her face about 2 months ago, but because she is fair, it wasnt that noticeable until she spent some time in the sun on vacation. We went to the dermatologist and there she was diagnosed. Ofcourse we were shocked and upset... she is 14, going into high school in september and just didnt expected that... it just came out of no where. So we are doing our best to learn about Vitiligo and i am reaching out to others, so i can better understand it and how to help my daughter deal with it. She seemed ok at first, got the cream (elidel) and i guess thought she would see results relatively quickly. Its only been about 3 weeks and there are no signs of improvement, i didnt expect any, but i guess she did, she broke down the other night. my heart breaks for her! so i told her i would look for support groups to help us, i dont know if she will come on at this point herself, but i thought i could find out information and pass it along to her. I also want her to know she is not alone and thought it would be good for her to see that for herself. So i guess thats it, just wanted to introduce myself and say "hi". Would appreciate any feedback and/or words of encouragement. Also, i know there are treatments out there, like i said, she is currently using a cream, but any information as far as treatments and success of them would be great.

Thank-you

Debbie Bello

Debbie:
Welcome ! When this condition hit my daughter 3 years ago, this site did not exist. I could not find another vitiligo family to share our story. Our first derm was a classical Jerk and always had his handle on the door knob. He had no energy to even listen to us or explain anything. We ended up finding a nice derm and slowly somehow we survived, but it was TOUGH. Now, with the existence of this site and excellent support from the members, you are in a much better situation. Per doctors, facial vitiligo is very treatable in the initial stages. You should see some change in 8 to 10 weeks. Elidel I believe,is a well proven drug. Do not give up. I am guessing, some people simply give up after 2 or 3 months. Our derm always says, it can take weeks or even months.

Also, stay positive ! If your daughter is lucky, the situation may very well get self resolved. YES, there are some cases. It is true because, this considion is auto triggered. You may want to carefully re-construct the activities from the preceding months of vitiligo onset. Hopefully, you can trace one or two root causes and try avoiding them. In our case, our child received vaccination from a new pediatrician that triggered Vit. Immediately after vaccination, we visited a country where temp was 115 degrees for 10 days, and got severe sun burn. There is a ton of research that says, sun burn can trigger vit. In summary, after 3 years of journy now, my daughter seems to get better. So should yours too. Stay Positive, and Good Luck !

Replies

Ariel Taub February 23, 2011 at 3:54pm

Hi Debbie

I'm sorry to hear about your daughter's situation - I think it's great that you are looking for ways to help her feel better about it. I got vitiligo when I was three years old and my parents took me to a doctor soon after I was diagnosed, actually in New York City, and after taking the medicine he gave me, most of my vitiligo went away gradually within a few years. I still have a little bit, but it's not noticeable really, except for in the summer because I have pretty dark skin. Anyway, I'd be happy to give you the name of the doctor who gave me the medicine, just message me. It was special drops that you put under your tongue, and it could have been a coincidence, but it started going away very soon after I started taking the medicine. I would recommend telling your daughter that it's very important to keep a positive attitude about it because that was something that I felt gave my vitiligo the extra push to disappear. I know it sounds crazy, but I truly believe that this skin disorder, as with many other physical problems, is a manifestation of emotional stress or what-have-you. Anyway, like I said, contact me if you want the info about the doctor and the medicine. Good luck with everything.
Lily August 10, 2010 at 5:01pm

Hi Debbie, just read your post. I think it is wonderful that you are involved with her skin condition and seeking a network. I have only had vit for a short time and only have feedback as a person with vitiligo. Encourage her to be herself and continue doing the things she loves to do and not let the depigmentation in her skin control her life. Personally, it can be overwhelming at times watching the spots enlarge and take on different shapes and sometimes miraculously repigmenting. In the beginning I looked for a cure and a reason but now I am focusing on life and do what I can do to stay positive (physically, mentally, emotionally). I have learned to deal with my spots, one day at a time. I think at this point I have accepted them and I have learned that I have to let the world accept me as I am. I am no different; I am still the same person inside. My point is to encourage your daughter to do the things she loves to do and not to limit herself because of embarrassment or shame. She is beautiful inside and out and the sky is still the limit!

Peace and blessings!
Nathan Yeti August 10, 2010 at 9:20am

Debbie:
Welcome ! When this condition hit my daughter 3 years ago, this site did not exist. I could not find another vitiligo family to share our story. Our first derm was a classical Jerk and always had his handle on the door knob. He had no energy to even listen to us or explain anything. We ended up finding a nice derm and slowly somehow we survived, but it was TOUGH. Now, with the existence of this site and excellent support from the members, you are in a much better situation. Per doctors, facial vitiligo is very treatable in the initial stages. You should see some change in 8 to 10 weeks. Elidel I believe,is a well proven drug. Do not give up. I am guessing, some people simply give up after 2 or 3 months. Our derm always says, it can take weeks or even months.

Also, stay positive ! If your daughter is lucky, the situation may very well get self resolved. YES, there are some cases. It is true because, this considion is auto triggered. You may want to carefully re-construct the activities from the preceding months of vitiligo onset. Hopefully, you can trace one or two root causes and try avoiding them. In our case, our child received vaccination from a new pediatrician that triggered Vit. Immediately after vaccination, we visited a country where temp was 115 degrees for 10 days, and got severe sun burn. There is a ton of research that says, sun burn can trigger vit. In summary, after 3 years of journy now, my daughter seems to get better. So should yours too. Stay Positive, and Good Luck !
- Debbie Bello > Nathan Yeti August 10, 2010 at 12:41pm
  
  I have been wondering about the possibility if something triggered this... right before this happened she was under stress (school tests) and she had gotten an MRI (for possible swollen optic nerves - came back negative) and also had several dental xrays, inlcuding a panoramic one (for her invisalign braces). So i have been thinking that one or all of these things triggered this. I will try to stay positive and i am feeling very lucky to have this forum.
Dawn L-B August 9, 2010 at 10:22am

Dear Debbie, I'm very sorry to hear your daughter has vitiligo. The first thing she needs to change is her diet. I'm wandering if any of you have an auto-immune ailment issues at home, because thats where is seems to come from and also stress. It is a disease that attacks the confidence and what worked for me to get over depression is meditation, not to get rid of the disease, but to build my confidence back. It worked for me, but I need to do it from time to time, becuase when I stopped for a couple of months I found my confidence slipped. Vitiligo attacks self confidence at all times. Since she does not have too many patches yet, it's best to add more vegetables to her diet and cut out sugars and dairy as much as you can. You are not alone and this site is very supportive.. I will walk with you through this trial and help you as much as I can. A lot of people here have been through a lot because of vitiligo and they will be able to point you in the right direction. A lot of water and some excerise if she can manage it... It also seems to get worse with stress and unhappiness, so do look deep into her to determine if she's worried about any thing. Success if yours. We are all here to assist each other. Good luck and God speed.

Dawn.
- Debbie Bello > Dawn L-B August 9, 2010 at 12:34pm
  
  Thank you both so much for responding.. i knew i was doing the right thing by joining this support group. Yes, there are auto immune issues, my mom has discoid lupus and my sister in law has an auto immune disease.
  I absolutely believe diet is a major part of how we can help control illnesses and I have plans to take her to a nutrionist... she is not a picky eater, so adding more veggies wont be a problem. I will make sure she drinks more water also, and i think we are ok on the excercise front, she is a dancer and has classes 4 - 5 days a week : ) She is most definately a person who stresses and in fact in hindsight, when these patches first appeared it was around the time she was taking lots of exams at school. I wonder if that maybe played a part in all of this. I do know that people are pre-disposed to auto immune diseases, so i am sure it would have come out at some point in time... just wish she would have been a little older, teen years are hard enough. I am very close with her, we always talk and i will continue to do so. She is an amazing girl, ofcourse i love her with all my heart - i am so glad i found this forum so that i can get the help we need to get through this. She has an appointment this week with an endocrinologist, some bloodwork came back with an increase in her TSH levels, and the dermatologist said that there are connections with vitiligo and thyroid issues. Have either of you had any other issues associated with vitiligo?
  Well, thanks again for responding... I feel better knowing that there is so much support out there for her (and me).
  
  Debbie
  - Dawn L-B > Debbie Bello August 9, 2010 at 7:49pm
    
    Dear Debbie... I've had an over active thyroid that caused the vit to start. I'm still battling my thyroid. I find exercise helps for that, because I'm tired of taking tablets. As for my vit. I've taken a decision, but I'm not sure it's a road you want to go down since it's just started with your daughter. I wish you good luck with all my heart. God bless you. Lots of love.
  - William M > Debbie Bello August 9, 2010 at 2:49pm
    
    Debbie, Your welcome! I also have an auto-immune disease. I have heard that yes thyroid issues are a very common with vit.. Stay on the site because there is always new info. on here and there are so many people who have tried different things and have different experiences!
William M August 9, 2010 at 7:34am

Debbie, You are correct that she is not alone. This is a great site with many great people here. I have only been on here for 2 months and have learned a lot more than I ever thought. The most important thing is for her to be patient. Protopic seems to be the cream of choice for Vit. on the face. Maybe ask your doctor his or her opinion on Protopic. Vitimins also play a important role for the immune system but STRESS IS THE WORST for spreading Vit. Try and slowly have your daughter join you with looking at this site and togther you ladies will fight this together and WIN!!!! God bless you and your daughter and tell her it is not the end of the world. She is just going to have to find what works on her vit. Also Vit. can on its own repigment and a lot of times stop spreading for years or even decades. There is no way to tell how agressive her vit. will be!

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