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发表于 2014-1-30 21:55:24
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求医前的准备工作：（附上一片英文文章，介绍的很全面，大家乘着春节学学英文。你们如果有需要过几天有时间，我再给大家翻译）
BEFORE YOU GO:
1. Ask if they have treated (not necessarily "cured", just treated) anyone with vitiligo before.
2. Ask how many patients they have with vitiligo (If you're in a remote area, your dermatologist may have never seen anyone with vitiligo, and so you may not have much of a choice. In that case you may need to find out as much as you can through the this site, books and other sources. Then take that information to your dermatologist and hope that he's willing to work with you
3. Ask if they would be open to trying new treatments?
4. Have they have treated children with vitiligo?
5. Ask if they have a Woods lamp (It's like a black light that they look at your skin with in the dark. It shows the patches of vitiligo.)
Once you're in the dermatologist's office:
1. Ask to have your child's thyroid tested. Sometimes there is a relation between thyroid and vitiligo. If there is a problem with the thyroid, and they get treatment it won't bring back the color but it could help to keep it stable.
2. You might want to have your child's folic acid and B 12 tested. You can find more information about this in Dr. Montes book. This isn't mandatory, just something to c**ider.
3. Ask if they know about the German Pseudocatalase (P-KUS), PUVA, Steroid creams, Vi**ins, and Light treatment. Make sure you know about these treatments as well.
4. Ask if they know of good make-up, cover ups or dyes, if that is what you want to try. They don't seem to work that well on young children since they rinse off or come off with perspiration. We don't try to cover up any of April's spots. First of all it would be almost impossible. Second, it would be telling her there was something wrong with who she is. She's a beautiful girl and there's no reason to hide, or keep any secrets about who she is. We take pictures of her often (maybe too often) and have photos of her all over the house. Once she's old enough and she chooses to use make-up or cover-ups we will help her in any way we can to find what is right for her.
5. Ask to be seen under the woods light. The woods light will show all the vitiligo spots and it may show some spots that are coming, but you can't see in regular light yet. If they're not sure it's vitiligo you may need a biopsy. They would take a very small skin punch, smaller than a pencil eraser and the thickness of a piece of paper, and they would send it to the lab. Our daughter had it taken from the back of her upper thigh. The doctor numbed the area first then took a quick punch of skin with something that looked sort of like a stapler. She had to have a couple stitches but seemed okay with it. She even showed off her stitches to her girlfriends at school.
6. If they recommend a treatment, ask what the side effects are. Make sure you're clear about what could happen. Get the instructi** for what to do with the treatment in legible writing. I have read about too many people that don't know what to do with a treatment once they get it. Or they use it for a year with no results because they have been using it the wrong way. Or worse yet they had no idea what the side effects could be. Since vitiligo is such a mystery and there is so little funding for research you will be your best expert. Some dermatologists will prescribe things that they know very little about, just because a patient asked for it, but then the patient is on their own. You will have to look out for yourself and your child by looking up what to do. You are your best expert. Don't just leave it up to someone else. Find out about what treatment you feel comfortable with and then find out as much as possible about it. I always thought that the dermatologist must know best, but that simply is not the case with vitiligo. We heard at the Vitiligo conference that some dermatology students skip right by vitiligo because they are told there's no cure and nothing can be done. For more information about vitiligo you can look around on this site or you can search the web. As always, be cautious with what you find. Question the miracle cures. The fakes ARE out there and they want one thing...your money.
THINGS THAT HELPED OUR DAUGHTER COPE
You may already know some of these, but it took me a while to figure them out, so I thought I would share what has helped us.
1. Let others know the truth
Be up front and answer all questi** as honestly as possible. Once children know about the condition and that they can't catch anything they usually just go about playing like nothing was any different.
2. What to do to help your child fit in?
I knew April would be starting kindergarten soon and she wouldn't know anyone at the school. I figured she would do better if she at least knew a few kids before she started. I put an ad in the small local paper about the new playgroup that was starting for all prekindergarten age kids that would be going to her school. The group met once every couple of weeks at the park. When April started kindergarten she knew several kids in her class and felt comfortable. She has been with the same kids for years now and they don't even see her vitiligo anymore.
3. What to do on the first day of school
We went to orientation day for kindergarten. I had talked myself into thinking no one would notice April's spots. Well, not only did her classmates notice, so do their brothers and sisters and moms and dads. There was a lot of pointing and whispering going on. I went home and cried (Not in front of April). Once I got that out of my system, I took action. For the first day of school I dressed April in tights and long sleeves. I sent a letter home with all the parents. It was told as though April was telling it. It said what vitiligo was, and what it wasn't, and April signed it. At the top it asked that they discuss this with their child and it had a photo of April's face. It seemed to work. Most of the kids just went about their business. I also went to the school nurse and gave her some information and we talked it over so I knew she understood.
4. Stay involved at school
April has had comments from time to time so we keep up the education. I talk with the principal often and always keep in touch with April's teacher. One year the nurse even went from class to class to talk about how we can all be different and talked about the vitiligo as a small addition to her talk.
5. Start a program of respect
There was a program of RESPECT at the April's school. It was very nice to see that the teachers talked about respecting others and really enforced it. They would not tolerate any teasing or name-calling. You could volunteer to talk to the students every other month or so and bring a project for them to work on. Maybe other parents might want to join you. At www.differentjustlikeme.com there's a 5-day lesson plan, coloring book pages and games to play. They are all free to download and easy to use in the classroom. You could even print them out and just put them into all the teachers in-boxes and maybe they could add it to their regular day (they are based on writing and reading so they wouldn't be cutting anything out of the learning day). They are all about acceptance and diversity. Some less** will need the book Different Just Like Me, which is usually available through the library, but many less** can be used on their own.
6. Follow your child's lead
April has always had a mind of her own about her vitiligo. She wears what she feels comfortable in. It's like she keeps teaching me these great less** and I try to keep up. At first, I wanted to tell everyone to stop staring. I wanted to explain it to them, but I could see that sometimes that made April uncomfortable. Her way to deal with it was to just ignore the stares, so I had to pick up on that. I asked her, every now and then, if she wanted me to say anything and she let me know; sometimes it's okay. I try not to pester her. I have sort of figured out her body language as to whether she is uncomfortable or if she wants me to step in to say anything, but I try to take her cues. Now when someone stares I look them right in the eye and just give them a big smile.
7. Don't always put the vitiligo first
I was a little concerned when April went to summer day camp in shorts and a T-shirt with all new girls that didn't know her. After camp I was dying to ask if anyone had asked about her vitiligo, but I didn't want that to be the whole focus of the day. I figured she would tell me if anything had happened when she felt like it. It turns out that no one said a word about it the whole day. (I just love those Girl Scouts).
8. What to do if your child is tired of explaining
We had been shopping at the mall and had about 6 different kids giving her "the look". It was more than usual and for the first time she hid behind me. I asked what she wanted to do. She didn't want to talk to each one because she figured we would have been there all day. She came up with the idea of handing out cards explaining her vitiligo. They had the Vitiligo Support International web site on them and she put "I'm just like you, I just have two colors of skin" plus some of the other stuff about not being contagious. We went to Kinko's and she picked out the colored paper she wanted to print them on and she cut them all out. At home she put on colorful stickers to make them more fun. She brought them to one of her summer camps where she wouldn't know anyone. They were a big hit. All the girls wanted one and I think they actually read them. That way she didn't have to explain it to everyone. I think that made her feel like she had a little more control over the situation. I keep the cards in my purse now and if someone is staring or asks she can give them a card, if she feels like it.
9. Let yourself and your child be sad about it sometimes.
April has "clouds" from head to toe. At first it was a shock to find out about her vitiligo. The first doctor said it wouldn't spread. Then it started to spread everywhere. It began as one small spot. I started to panic. We went to so many doctors and spent so much money. We tried almost anything that was c**idered safe to try. I have gone through my ups and downs. I cried sometimes in the beginning (not in front of April) I talk to close friends and family just to get all the fears out and it always makes me feel better just to say stuff out loud to a trusted friend. I used to just try to hold it all in and tell myself not to be "a big baby," but then the pressure would build up. If I can let off steam every once in a while and admit that it makes me sad sometimes, then I can go on and I really am okay. If April tells me she doesn't like her vitiligo, I try not to talk her out of it. I just listen to her and try to empathize. I don't want her to think she's got to be happy about it all the time. I want her to know it's okay, even normal, to feel sad sometimes.
10. Try to be here NOW for your child
I used to worry about what would happen to April in the future. All the "what ifs" would keep me up at night. I would imagine April going all the way through from middle school and dating to marriage and what would happen if she wanted kids. Would they have vitiligo too? Then on to what would happen with them and so on. I would be so distracted I wouldn't be focusing on what April needed right now. So I try to stay in the here and now, for April's sake. I have to keep telling myself that she's okay now and she will be okay in the future, I just can't take up our time now, by worrying about things that probably won't even happen in the future.
11. Role play
April and I talk about what to say if someone asks about her vitiligo. We do a little role playing to act out how to respond. Sometimes I pretend to be her and she calls me a name she has heard or she just asks me about my skin. Then she plays herself and I ask her about her skin. We get pretty silly sometimes and try to keep it light, not too serious. It just gives her a chance to practice how to respond with a truthful, simple answer. Now she says "I just have two colors of skin. I was born this way."
12. Let your child figure out what to do
April seems to tell me if anyone has said anything about her vitiligo and I try to just listen. I try to let her figure out what she wants to do about it. I think that helps her to feel like she has more control. If she asks for ideas, of course I try to suggest something, but she will need to be in charge on this. I won't always be there to help her. In first grade a second grader pushed her and called her a name. I let April tell me about it then asked "What do you want that girl to know?" She said she wanted her to know she didn't like it and didn't want to be pushed anymore. She's usually quiet and a bit shy, so I worried whether it would happen again. I was making plans to go up to the school and talk to the girl and the teacher of the girl that pushed her. Just as I was leaving to go up to the school, the phone rang. It was April. She said she had gone up to the girl and told her not to push her any more because she didn't like it. Her teacher was so impressed that she let April call home to tell me. That girl never bothered her again.
13. Get involved
Sometimes I feel completely out of control over this disease. The only control I have is to raise money for research and awareness. Being on this wonderful support site helps a lot. I also give a portion of my book sales to research and awareness (Different Just Like Me). If you buy it through this site, 10% goes to Vitiligo Support International. I try to step up where needed and it makes me feel like at least I'm part of the solution and not part of the problem. So if you ever feel helpless just step up and ask what you can do, or send a check to Vitiligo Support International. There's always something you can do.
14. You're not alone
I think April felt she was the only one that had vitiligo and that made her feel even more different. We found a support group (years ago) over the Internet and now she has pen pals all over the world. We have a big map with everyone marked with a flag so she can see how many others there are all over the world. We also go to the vitiligo conference each year so she can meet, face to face, with others her age.
15. Change the subject
Sometimes when people ask about April's vitiligo she will answer but I can see she wants to change the subject. Now that April has pen pals from all over the world, it gives her an easy segue into talking about how cool it is to know all these kids form other country's. She can turn the conversation around so she's talking about something positive that has come because of this disease.
16. Let your child know they're okay just the way they are
We don't try to cover up any of April's spots. First of all it would be almost impossible. Second, it would be telling her there was something wrong with who she is. She's a beautiful girl and there's no reason to hide, or keep any secrets about who she is. We take pictures of her often (maybe too often) and have photos of her all over the house. If she ever chooses to use make-up or cover-ups we will help her in any way we can to find what is right for her. There was a boy on the vitiligo support list serve years ago that tried to hide his vitiligo. His parents thought it was best and he would fit in better. It worked until the vitiligo spread to his hands. They tried make-up but on an active boy it was very difficult to keep on. He would pull his sleeves down and try to hide it. His whole body language was one of shame. He was thinking about his vitiligo and how to keep it covered all day, it was difficult for him to focus on his studies and his grades went down. Soon he had kids whispering about his skin. Because they didn't know the truth about it they assumed the worst and even made stuff up. They teased him and then even beat him up. It got so bad he needed to change schools. They decided to come right out the first day and explain his vitiligo at the new school. He was fine from that day on and made friends and could focus on his studies. |
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发表于 2014-1-28 21:14:00
发表于 2014-1-29 13:06:40
