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Hi i am a 15 years old girl and I have a vitiligo

Posted , 4 users are following.

Biahxx
Biahxx

I first discovered white spots on my legs when I was in the 5th grade (I think) and now I am going into 11. I have white patches from under my knees down and a few on my thighs but they are tiny dots. I have one on my eye lid and one near it and today I found new spots.lliterally balled my eyes out. I don't know if I have vitiligo or not but I'm pretty sure I do. All the symptoms make sense, I have discolouration on my lips, premature white hair and of course white patches. Yes I've been seeing a skin doctor but tbh I really don't hear him say what I have, I'm not sure. I really need to see a new doctor. The treatment I'm getting done are creams that I have to put on twice daily. But I read the info booklet that comes with the medicine and it says eczema but I'm pretty sure it's vitilgo. Having this makes me feel so low of myself and jealous of my family, my friends and everyone. It makes me feel insecure about myself and the worse part is that I feel like my mom gave up on this and that she doesn't care about it as much as she did before. I don't want to have this, it scares me. Especially when I research up on and that there isn't any cure and what happened to Michael Jackson (not trying to be rude). I sometimes cry myself to sleep or for hours literally thinking of this makes me tear up.. I hate this. Seeing my sister and my friends being able to wear summer clothes like dresses,shorts, etc makes me feel even more sad. I feel like no one understands.. I have only told my best friend out of all my friends and none of my relatives know. I'm the first to have this in my family and it sucks. I hate when people ask me questions like "what is that?" "Is that a birthmark" "why do you have that" or "what happened there" I just wish my sister and mom knew how I am feeling and I wish they took it sseriously. I feel so ugly in my own skin and just thinking about it makes me cry. I just really want someone to understand how Im feeling and what treatment they are getting.. Can any of you guys help me out? Thankssmile

1 like, 12 replies

12 Replies

  • tobias39
    tobias39 Biahxx

    Posted

    Hi raabiah, first of all, you're not alone with this. There are millions like you and me, around the world, who suffer from vitiligo. I have found that for me creams did never work, but phototherapy really did. It's narrowband UVB phototherapy that I have had done (not broadband or UVA, those are older technologies that are less focused) and in 2-3 months I've had great success. However, it's not a cure, it's just keeping the patches under control by repigmenting them (allowing them to get "repainted" in their initial skin color). I've had three sessions per week of under a minute each, so it's not really time consuming (except for going to the phototherapy center and back). There are also phototherapy machines for rent, if that would be an option for you in the future. But I would say right now you should go to a dermatologist and ask about phototherapy. If he/she says "no", find another one, as many of them seem to not know enough about phototherapy yet and tend to dismiss it. If you need any kind of further info, let me/us here know, no problem at all. And don't let yourself be depressed by vitiligo - remember there are ways to keep it under control!
    • Biahxx
      Biahxx tobias39

      Posted

      Thank you so much for replying! And I will definitely try this out!! But is it expensive?
    • tobias39
      tobias39 Biahxx

      Posted

      Depends on where you live. Here in Europe, treatments are compensated up to 100% by the national health systems (with some paperwork to be filled out, I believe in the US it's even easier, as phototherapy has been done for longer time than here). But if your medical insurance won't cover the costs, they should be around 25-30 euro per session, which adds up to about 75-90 euro per week. It's a lot, but you'll definitely get the money back from your health system - ask any dermatologist you go to, they should know exactly how and what. BUT if you have the misfortune of encountering one of those dermatologists who are against phototherapy, let him be and find another one - there are still some who, mostly due to lack of information and being afraid of being up-to-date on technology - refuse to see into phototherapy (it's definitely easier for them to just prescribe some ointment!). Let me know how it goes along the way, I'll be here with all the advice you might need, in all the details.
    • tobias39
      tobias39 Biahxx

      Posted

      Oh and one more thing: don't expect results sooner than 2-3 months! They will definitely be there, but phototherapy works this way, it takes at least two months to show results. Vitiligo is one of the best treatable skin disorders with phototherapy, I have seen lots of results and can recommend it 100%, especially as you are still young.
    • Biahxx
      Biahxx tobias39

      Posted

      Alright thank You so much!!! Also would this help get rid of the white spots on my lips too?? 
  • anony76522
    anony76522 Biahxx

    Posted

    I completely agree with tobias39, you should definitely try uvb phototherapy as I've heard this is most successful at repigmenting the skin. This I believe works best at earlier stages of the development of vitiligo so I'd advise you to consult a dermatologist as soon as possible.

    I understand the difficulties that come along with vitiligo, it's definitely not easy and I understand the social implications it may have.

    But, not to be insensitive, trust me when I say crying, moaning and keeping yourself isolated will get you nowhere. As you already know, besides the depigmentation, vitiligo doesn't come with any other health problems. What'll make you sick is coping with it badly. I've also read that stress MAY actually increase the rate of depigmentation!

    The best thing for you is to have a positive mindset, something I always tell myself is that it could always be worse.

    Stay with a group of friends that'll love you know matter what (that should be innate for your family). If you don't have that then make new friends, there are plenty of nice people out there.

    Have a long term goal you can strive towards, don't let this condition stop you from getting into the career of your dreams. (check out Chantelle Brown-Young)

    Give uvb phototherapy a good chance, even if there aren't immediate results. Don't worry if it ends not working for you, there's alway skin camouflage- it's like waterproof makeup that lasts up to a week. So you'll be able to wear summer clothes and even go swimming. Just get your GP to refer you to a clinic to have a consultation with a camouflage expert.

    • Biahxx
      Biahxx anony76522

      Posted

      yeah I 100% agree and I do admit I overexaggerate like it could be worse but it just sucks especially when you're the only one in your family and friends who have it and I'm pretty sure in my school. But yes I'm definitely going to ask my doctor and see what he says! 
    • anony76522
      anony76522 Biahxx

      Posted

      That's good to hear. I know how you feel, I'm also the only one in my family and friends that has this. I'm 17 turning 18 and I've had it for about 7 years now. It does get easier, you learn to feel comfortable in your own skin. I'm also planning to try uvb phototherapy in the next coming months so I'll let you know how that goes for me. But in the meantime I'm thinking of using the camouflage just to cover up until I can repigment most of my skin.
    • Biahxx
      Biahxx anony76522

      Posted

      Yeah definitely let me know!! And yeah maybe I will do that too
  • tobias39
    tobias39 Biahxx

    Posted

    Oh, nothing to thank for! Keeping the fingers crossed for you, everything's going to be fine, you'll see. As for the lips, that's an info I don't have and can't confirm, unfortunately. If the spots are originating from vitiligo, than yes, chances are very high the treatment will get rid of those, too. Take care and keep us updated!

     

    • Biahxx
      Biahxx tobias39

      Posted

      I hope so!! Wait have you done this treatment?? And yes they did originated from vitiligo and ok great!! Thanks I will smile 
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