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Special portrait series in LINDA.
The September issue of LINDA. is out, containing a series of beautiful portraits of people with vitiligo.
Our promotional film 'Courage In Motion'
The LVVP has had a promotional film made, which can now be seen on YouTube.
Light therapy can always be done at home
Nowadays, light therapy can always be done at home. That saves a lot of time, because you no longer have to go back and forth to the hospital for a few seconds of exposure. But how do you ensure that you get the right equipment at home?
The Spotlight!, the magazine of the LVVP, devoted an article to it in the last issue. It stated that it depends on the hospital's policy whether home lighting is offered. If this is not the case, you as a patient are free to transfer to an institution where home treatment is facilitated.
With a completed request from your practitioner, you can request the right equipment from Medizorg, for example. Sometimes it will be a small light unit for just hands or face, for example, but there can also be a complete cabin in which the entire body can be illuminated. Children can start using lighting from about the age of 8. The results are often good, especially in children with a darker skin type and spots on the face.
Read the article here Spotlight! 4 2013 pg 12-13
From now on also Spotlight! received? This can be done by becoming a member of the LVVP for only 26 euros per year (2016). Spotlight! is published four times a year. You then immediately support the association, which, among other things, promotes research into the cause and treatment of vitiligo.
Women, watch your thyroid!
Are you female, over 30 and do you have vitiligo? Then have your thyroid checked!
It appears that female vitiligo patients in particular are at risk of developing a thyroid disorder later in life. The AMC in Amsterdam now screens all women with vitiligo from the age of 30 for thyroid abnormalities.
This is what Dr. Wietze van der Veen, until recently a dermatologist at the AMC/SNIP and now at Medisch Centrum Haaglanden, says in the latest issue of Spotlight! He also always tests the thyroid gland in children with vitiligo, although fortunately the chance that a child has a thyroid disorder is very small (6 percent).
Thyroid disorders are - just like vitiligo - autoimmune diseases. Vitiligo patients have an increased risk of developing another autoimmune disease, with thyroid disease being the most common. Your thyroid gland is located at the front of your neck and produces hormones.
Vitiligo and thyroid problems: there is a connection
There is indeed a connection between vitiligo and thyroid problems. Following the discussion at the members' day, the LVVP inquired with dermatologist Dr. Wietze van der Veen, who specializes in pigment diseases. Dr. Van der Veen was unfortunately unable to attend the members day, but he gave the following response today:
'Thyroid problems (hypo-but also hyperthyroidism) are seen more often in vitiligo patients than in the average population. The problems actually mainly occur in women and the frequency increases with age. Ultimately, about one in four women will experience problems. At the SNIP, we only screen children and women over the age of thirty for thyroid failure. The children because of the potentially serious consequences, such as growth retardation and learning problems'.
The LVVP has previously published about the relationship between vitiligo and thyroid problems. Unfortunately, this did not come out well on the members' day. Vitiligo patients are advised to be examined by an internist who specializes in endocrinology (the treatment of diseases of the endocrine glands, such as the thyroid, parathyroid gland, pancreas (e.g. diabetes), adrenal glands, genital organs and pituitary gland.
In Spotlight! No. 1 of 2013 contained an interview with endocrinologist Dr. Rob Gonera of the Wilhelmina Hospital in Assen. He indicates that in patients with an autoimmune disease (which is vitiligo), he is always alert to the presence of other autoimmune diseases such as thyroid disease, diabetes, gluten allergy (celiac disease) and lack of vitamin B12.
Read the message here 'Stains on your hands? Watch your thyroid!'
Read the article from Spotlight here! No. 1 of March 2013. Spotlight!_March_2013_page13
Stains on your hands? Watch your thyroid
Research shows that people with many vitiligo spots on their hands are at greater risk of thyroid disease. This risk increases even more if there are also spots on ankles and elbows.
This is what Prof. Dr. Nanja van Geel, dermatologist in Ghent, said this week at a meeting organized by the SNIP (Netherlands Institute for Pigment Disorders Foundation) in the Academic Medical Center in Amsterdam. She advised the dermatologists present to be alert to thyroid failure in patients with vitiligo on hands, ankles and elbows.
It was previously clear that vitiligo patients more often have a thyroid disorder than people who do not have vitiligo. What is new is that it mainly concerns vitiligo patients with spots on the hands, ankles and elbows.
Genetic predisposition
Nanja van Geel is an expert in the field of vitiligo. She has been researching this skin condition for years. In an extensive interview in Spotlight! No. 1 of this year, the magazine of the LVVP, she talked about her research into the genes involved in the development of vitiligo. This has shown, among other things, that people with vitiligo often have a genetic predisposition to autoimmune diseases, including thyroid disorders, but also type 1 diabetes and rheumatoid arthritis. It also turned out that more than 30 percent of vitiligo patients have a family member with vitiligo. Yet the chance that a child whose parent has vitiligo will develop the same disease is no greater than 6 percent.
Members of the LVVP receive the magazine Spotlight! four times a year. For 26 euros per year (2016) you can become a member and support the work of the patient association. More information about membership
Miracle cure for gray hair and vitiligo?
If many reports appear in the media about a miracle product, while it has not yet come out through the channels of dermatologists who do a lot of research into vitiligo, it usually concerns a product that promises a lot but does not really help much. This also applies to the treatment that would work against gray hair and vitiligo. For the time being, this does not seem to be the miracle cure that vitiligo patients are waiting for.
The LVVP asked the Netherlands Institute for Pigmentation Disorders Foundation/AMC for a response and received the following information:
'The research in question by Dr Karin Schallreuter was only carried out on 5 patients, but it is remarkable that UVB helped so well in these patients with segmental vitiligo (on one side of the body), and it is especially special that white hairs in the white spots re-pigmented. Dr Schallreuter has always operated somewhat on the margins of the scientific mainstream and the pseudocatalase research she has been conducting for years has never been replicated by others. We would therefore be wise to temper our high expectations until more extensive research in other research centers confirms these data.
By the way, much of the media attention was generated by the editor-in-chief of The FASEB Journal in which the research was published. The editor-in-chief stated in the press that a solution to the 'problem' of gray hair had now been found. But that's not what the research is about at all. After all, this has been performed on patients with segmental vitiligo. Dr Schallreuter does not claim that at all.
So unfortunately we will have to wait for some more research results.'
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Vitiligo: hereditary or not?
Is vitiligo hereditary or not? You will get an answer to that question in the March issue of Spotlight! magazine, the magazine of the LVVP.
The theme of this song is vitiligo and family. The editors spoke to the Westra family, who sees the white spots appearing in different generations. "We are extra alert to the children," they say.
In the meantime, continuous research is being conducted into the mode of inheritance of vitiligo. Professor Dr. Nanja van Geel, expert in the field of vitiligo, talks about this in the magazine. "The chance that your children will not get vitiligo is still many times greater than the chance that they will get it," she says.
Also in this issue is an article about our volunteer Els Sonnemans, an article about autoimmune diseases in the family, scientific news and a new section: 'Vitiligo across the border'. And of course you will find the columns of Vilan, Christina, Diwana and Lianne, the Spotjes and our youth pages.
This first issue of Spotlight! In 2013, all members of the LVVP were notified around March 20.
Not a member yet? Register quickly and from now on you will also receive the Spotlight every quarter! Membership only costs you 26 euros per year (2016) and brings you into contact with other vitiligo patients. You will also stay informed of all developments regarding research and treatment of vitiligo.
Reimbursement for UVB treatment in basic insurance
All health insurers have included reimbursement for UVB (home) treatment in the basic package. The costs are covered by the mandatory deductible.
Medizorg, or another supplier of UVB light equipment, must make agreements with the hospitals about reimbursement. This has now been arranged for most major hospitals. It is a bit more difficult for small hospitals and independent treatment centers. Patients treated there are advised to check with the dermatologist whether there are agreements with, among others, Medizorg and the health insurer about reimbursement. If that is not the case, it must be arranged first.
It is unknown whether additional insurance would be useful to reduce the personal contribution for this treatment. Patients will have to check this with their own health insurer.