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Live Podcast: My mom has vitiligo

mom-has-vitiligoVitiligo Friends Live Podcast: My Mom Has Vitiligo

Nathalie talks with her daughter, Emerald, about how vitiligo effects their lives and Emerald shares what it’s like to love and live with someone who has vitiligo.
Also, Nathalie discusses the process of starting a face-to-face vitiligo support group in your area.

Date: Friday, Feb.11, 2011

Time: 1:30pm CST

Place: Vitiligo Friends on Blog Talk Radio

Listen to internet radio with vitiligofriends on Blog Talk Radio

If you can’t make this live show, you can check it out online live each Friday or download the podcast from iTunes:

You can use this qr code to put it directly on your iphone

itunes,vitiligo podcast,nathalie pelletier

How to start a local vitiligo support group


How to Start a Face-to Face Vitiligo Support Group

A support group can be an important resource because it can help people who have vitiligo deal with the sense of isolation that many feel and it gives them a great opportunity to get out, meet other people, and widen their circle of support. A vitiligo support group can also be an important resource for sharing common experiences and resources.

When I imagine a support group, I usually think of a group of people sitting in a circle of chairs talking, but your support group can be so much more. It doesn’t always have to be a serious occasion. There are so many ways to socialize AND give/receive support. You can play board games, talk about books or movies, organize a fund-raising event for your area, or plan a fun outing for another time in that month…you get the idea. Make it fun!

If you start vitiligo support group I will list it for free on this site (if you like) so that people can find out about it.

Where do you begin?

1.        Find a centrally located meeting place. Churches or Synagogues often let support groups meet in their basements. You can also try restaurants, Coffee shops, hospitals, libraries, community centers, schools or universities. You may have to call a lot of places because many groups use these spaces, but if you keep at it you shouldn’t have too much trouble finding a meeting space. If possible, find a place with free or inexpensive parking in a well-lit area.

Some of these places may require a small ‘rent’ of a few dollars a week or a month. If so, these places will usually lower the rent or even drop it to zero if you explain that you are starting a new group and won’t have a lot of people in the beginning.

The recommended way to pay for a room ‘rental’ is to take a collection at every meeting (pass the hat or the basket and people throw in a dollar or two or whatever they can). This usually covers the rent. Important– Always make it clear that nobody has to donate if they don’t want to; there should be no pressure about donations.

2.        Set a meeting time and keep to it faithfully. I suggest that you meet monthly on approximately the same day and time. If the date and time varies too much people will get confused about whether or not your meeting is ‘on’ or not this time around.

Be sure to be on time for the meeting and stay for the whole meeting time, even if no one else comes in the beginning. (Sometimes a new person will get lost on their first visit to your group and they might show up late– even in the last 5 minutes of the meeting, so just be patient and wait through the whole meeting time so that you can greet all newcomers and make them feel at home).

This will help your group to grow and help it meet that critical mass where it becomes a self-perpetuating support group, no longer dependent on you.

How will you tell others?

1.        Advertise the support group meeting on an ongoing basis. **Very Important** Support groups rarely last very long by word of mouth alone. A regular ad in a newspaper is essential to the success of a local (face-to-face support group). However the good news is you can often get this advertising for free or cheap. First, try calling the ‘Calendar’ department of your local Newspapers, they often list support groups for free.

2.       Contact your local media and ask if you can submit a public service announcement (PSA). PSAs are generally free of charge and should contain the group’s purpose, meeting time, and location.

3.       Print up flyers and take them to your local dermatologist offices, doctor offices, and hospitals, and ask them to recommend your group to anyone with vitiligo who visits them. Be sure to set up your internet pages first so that contact information can be included on the flyer.

4.       Create a Facebook page and a Twitter account for your support group. This will make it simple for you to set up meeting dates, disseminate the information to members (friends), and best of all you can post notes and photos about the meet-up.

5.       Lastly, go to http// and create a vitiligo support group for your area; you’ll be amazed at how many people you will reach!

Future Meetings

1.       Identify and Respond to the Felt Needs of Your Members.

2.       If your group is new and doesn’t follow a set program for helping members help one another, always remember to plan your groups’ activities and goals based upon the expressed needs of your members. Share your vision.

3.       At the very first meeting, go “round-robin” permitting each member an opportunity to say what they would like to see the group do. Then discuss these needs and come to a consensus as to which ones you will address first. Don’t make the same mistake that some professionals make in professionally-run groups–of thinking that you know the members’ needs without ever asking them.

4.       Remember to regularly ask your new members about their needs, and what they think the group might do to meet those needs. Similarly, be sure to avoid the pitfall of the core group members possible becoming a clique. The welcoming of new people into the group is a process that continues well beyond welcoming them at the door.

5.        Help between meetings. Many groups encourage the exchange of telephone numbers or a telephone list to provide members with help over the phone when it is needed between meetings. Older groups have a buddy system that pairs newcomers with veteran members.

If you plan on starting a support group, please feel free to contact me if you need any help 🙂

Is UVB the best treatment for vitiligo?

uvb-vitiligoThere have been many comments asking about UVB treatment for vitiligo, so I will tell you about my experience with it.

One summer, years ago, I did a personal experiment to see if the sun could repigment my vitiligo. Each day I sat in the sun for 15-30 min and every day brought new dark freckling. It was very exciting to realize that my Continue Reading

Vitiligo treatments: are they worth your life?

vitiligo-safe-treatmentsWe all anxiously await the cure for vitiligo, but in the meantime let’s be aware of the full ramifications of the products we use to deal with vitiligo; after all, our skin may be riddled with white patches, but at least we are healthy.

Tonight I came across a very interesting article about a product sold online which is used to whiten the skin so the vitiligo white patches are no longer obvious. Sounds like a promising alternative, but it comes with potentially deadly side-effects. And while it is true that almost all medicines come with an absurdly long list of side-effects, most times the risk out-weighs the benefit of saving your life.

Living with vitiligo is very difficult emotionally, but I don’t think we should risk our lives to feel ‘normal’…there is just too much to live for.

Read this story and tell me if you would use this product despite the side-effects.

UAE women desperate to be fairer using deadly vitiligo injection

An increasing number of women in the UAE are turning to drugs used to treat vitiligo patients, to whiten their complexion and get fairer skin.

Health experts have warned that the misuse of such drugs can cause of serious diseases like cancer.

These girls are so desperate to become ‘white’ that they go to the extent of taking “the eldoquin injections used to treat vitiligo”, according to one doctor who receives several requests to provide the treatment.

Vitiligo is a chronic disorder that causes depigmentation of patches of skin. It occurs when melanocytes, the cells responsible for skin pigmentation, die or are unable to function.

Speaking to Emirates 24|7, Dr Ghada Abu Elhosn, a dermatologist at Al Buhaira Medical Center in Sharjah said that these injections are being sold illegally in the private sector in the country.

“Doctors purchase these injections from other countries such as the US. They are very expensive. One dose of it can cost around Dh5,000. And in order for a normal girl to get the desired result, she has to take a number of injections. However, most girls who want to change their skin colour do not care about the cost. They are ready to pay any amount to get the desired results.”

Dr Ghada added that eldoquin injections kills the melanin cells in the skin, thus, it transforms the skin color to white.

“These injection are mainly used to treat vitiligo patients who get the disease and whose skin transforms by 75 per cent to white color. However, if the white in skin was less than 75 per cent, then we don’t give the patients these injections, and instead of it, we try to treat the affected areas. In most of the cases, they patients get treated.”

She pointed out that she receives many girls who come seeking to get this injection. “However, we do not give it to them because it can cause serious diseases such as cancer, liver problems, lack of immunity and many more. It is not worth it.”

According to another dermatologist from Al Tawam Hospital, these injections are not available in the private sector.

“Government hospitals mainly have such injections. Even here, we do not give it easily to anybody who wants it. I know that the girls who want such injections must sign on an overtaking and they take the responsibilities for any future illness or health problem which may be caused by taking it. We never give it to a normal and healthy person. We only give it to vitiligo patients.”

Emirates 24|7 spoke to a number of women who were desperately seeking the injection.

Aisha, a 35-year-old national mother of two said that she has been trying to get this injection for many years.

“I am not fair. My husband is fairer than me. I tried many whitening creams and tonics, but the results are not satisfying. Once I stop using them, I go back to my natural color. This is annoying as everybody see my husband more handsome and with better skin color.”

She added that she tried to get this injection from many private hospitals, but failed to get it.

“They refuse to give it to me. The doctors say it is not good to be given to a normal person. For me, it doesn’t make a difference as the risks are not 100 per cent. They say that these problems may happen. I have two kids, and I am not planning to have more children.”

She added that she is willing to pay high costs to get the injection, even if it costs Dh5000 per injection.
“My husband also encouraged me to get the injection. He says he wants to see me more beautiful.”