Message From the Executive Director
Dear Members and Friends of VSI,
What first brought you to VSI?
I still remember when I found VSI. I was broken. The once confident and active wife, mother, and volunteer had been reduced to an empty shell. I desperately needed information about this disease that had rocked my world, and I needed to talk to others who truly understood what I was going through.
I was nearly elated after hearing treatment success stories from other VSI members. Filled with hope, I began calling local dermatology offices trying to locate Narrowband UVB light treatment, only to learn that there were no such light units in our city.
That’s OK. I started the calls again, this time trying to locate a doctor who prescribed NB-UVB home light units. Success! I found one – but had to wait several months for the appointment day to arrive.
Finally, the day arrived!! .... then defeat .... I’ve never felt more discouraged in my life than when that dermatologist told me that home units were prescribed only for psoriasis patients because light treatment was too dangerous for vitiligo. As dark as that moment was, it served me well. Frustration soon turned to anger, lighting a fire inside that fueled my incentive to keep fighting.
I called more offices and saw more doctors. I eventually found one willing to listen, willing to at least look at the peer reviewed information I’d brought along documenting the success of vitiligo treatments, and most importantly, one who respectfully acknowledged the emotional toll this disease had taken on my life.
Everyone has a story.
I know, because I’ve spoken with a great number of you. Each time I hear from another person who’s been told to go home and forget about it, just be glad it’s not a serious disease like cancer, or that there are no treatments, or any of the many other callous, disrespectful, or erroneous excuses – I am taken right back to the very place that ignited my fire all those years ago.
After all this time, it seems that most people still initially come to VSI for the very same reasons that brought me - emotional support and information. Those resources are critically important to the process of healing bruised spirits and reclaiming lives.
But, in time, we all want more......
We all want, and need, understanding and validation of the seriousness of this disease. Vitiligo IS worthy of more research dollars for better treatments. It is NOT just a cosmetic condition. It not only DESERVES better treatments, but those treatments SHOULD be covered by insurance.
VSI is the only vitiligo organization actively engaged in
national-level collaboration to improve the future of vitiligo.
Just Fixing Today Is Not Enough. We Want More and Deserve More.
With Your Support, We Can Do More!
Together We Can Make a Difference!
This organization is a Silver-level GuideStar Exchange
participant, demonstrating its commitment to transparency.
Vitiligo and Thyroid Disease
A Proactive Approach to Controlling Your Health
Have you ever heard or read about a community with a traffic intersection notorious for accidents, yet the authorities seem determined not to increase traffic safety measures until the history of collisions results in a fatal, or near fatal crash?
Your health should not have to parallel this analogy. The purpose of this article is to help you develop a proactive strategy to managing and controlling your health, before your health controls you. Being proactive gives you the time and flexibility to prepare and make decisions in advance of problems, rather than picking up the pieces after the crash.
How is Vitiligo Related to Thyroid Disease?
The simple answer is, by autoimmunity. By definition, an autoimmune disease is when your body’s own immune system mistakenly identifies specific cells in your own body as foreign and creates specific antibodies to attack them. In the case of vitiligo, your body’s immune system creates melanocyte-specific antibodies that attack your melanocytes, which are your pigment-making cells. With autoimmune thyroid disease (AITD), the body’s immune system creates thyroid-specific antibodies that attack the thyroid gland.
Antibody: a protein made by the body to target and attack foreign substances such as bacteria, viruses, or disease
Antithyroglobulin antibody: When your immune system attacks thyroglobulin, an antibody known as the Antithyroglobulin antibody is produced. These antibodies can attack proteins involved in the production of thyroid hormones rendering them dysfunctional.
Autoantibody: An antibody produced by the body to attack something in its OWN body when it mistakenly identifies and targets something in its own body as foreign.
Thyroid peroxidase (TPO): An enzyme found in the thyroid gland important to the production of thyroid hormones
Thyroid peroxidase antibodies: (TPOab): Autoantibodies directed specifically against thyroid peroxidase which indicates a likelihood of an autoimmune thyroid condition such as Hashimoto’s or Graves’ disease.
Thyroglobulin: a protein produced and used by the thyroid gland to make the T3 and T4 hormones
Thyroid stimulating hormone (TSH): This hormone is produced by the pituitary gland to tell the thyroid gland when to make and release thyroid hormones.
The development of most autoimmune (A/I) diseases includes a substantial hereditary component. So, if you have vitiligo, you inherited certain vitiligo risk genes from your parents. How does that correlate to A/I thyroid disease? Thanks in large part to an international team of researchers headed by Dr. Richard Spritz of the University of Colorado, autoimmune connections that were previously unknown have begun to surface and unravel the complex interrelationships between A/I diseases like vitiligo and autoimmune thyroid disease (AITD).
In some instances, the very same gene/s associated with the risk of developing one specific A/I disease (like vitiligo) have also been found to be associated with other autoimmune diseases. This shared association helps to explain why some people who have been diagnosed with one A/I disease may be more likely to develop certain other A/I diseases that share the same risk genes.
In the case of vitiligo and AITD, this shared gene association is a likely culprit for making AITD the
most prevalent other A/I disease found among vitiligo patients and/or their family members.
What is the Thyroid?
The thyroid gland is a small butterfly-shaped organ located just below the "Adams apple," or larynx. Its job is to take iodine from foods and convert it into two major thyroid hormones:
Triiodothyronine (T3): The active thyroid hormone
Thyroxine (T4): The thyroid storage hormone
These two hormones circulate throughout the body and regulate the metabolism of every cell in the body. If the level of the thyroid hormones (T3 & T4) drops too low, the pituitary gland produces thyroid stimulating hormone (TSH) to stimulate the thyroid gland to produce more hormones. If T3 and T4 levels are too high, the pituitary gland releases less TSH to slow production of these hormones.
There Are Two Types of Autoimmune Thyroid Disease
- Hashimoto’s, a type of hypothyroidism (underactive thyroid) is the result of antibodies destroying the thyroid gland, causing decreased levels of the critically needed thyroid hormones (T3 and T4), which in turn causes the pituitary gland to release increased levels of the thyroid stimulating hormone (TSH).
- Graves’ disease, a type of hyperthyroidism (overactive thyroid) is the result of antibodies which stimulate the thyroid gland, causing increased levels of the thyroid hormones (T3 and T4), which in turn causes the pituitary gland to decrease the level of the thyroid stimulating hormone (TSH).
Be Prepared: Recognize the Signs and Symptoms
Hypo/Underactive Thyroid causes a decrease in metabolism, which will in time result in a decrease in many of the body’s functions. The symptoms listed below are a few of those typical of hypothyroidism. However, depending on a variety of factors, you may experience some, but not others. The longer the condition is left untreated, the more symptoms you are likely to experience, and the more severe they may become.
Hyper/Overactive Thyroid causes an increase in metabolism, resulting in symptoms associated with an increase in many of the body’s functions. As noted above, the symptoms listed below are a few of those typically associated with hyperthyroidism; however, each person’s experience is different. Also, as noted above, the earlier the condition is treated, the better.
Diagnosing Thyroid Disease
If your doctor suspects a thyroid dysfunction, he/she will most likely begin by asking you a few questions about things like any family history of autoimmune diseases, and what medications you are currently taking. Then he/she will order diagnostic tests to help evaluate thyroid function, and/or diagnose hypo, or hyper thyroidism.
There are a variety of thyroid tests and panels available and they can be ordered by your doctor individually, as a group, or as a panel. The tests listed below are used to evaluate thyroid function; however, the list is not intended to be suggestive or exclusive. Your doctor will order tests based on your specific health condition.
Diagnostic Tests for Autoimmune Thyroid Dysfunction
- Free T3: Measures blood level of T3 hormone that is unbound, meaning that it is available
to be used by cells and tissues.
T3 (Total T3): When not preceded by the word “Free,” it is referring to the “Total” amount, which includes both bound (unavailable) and unbound (available) hormones.
- Free T4: Measures blood level of T4 hormone that is unbound, meaning that it is available to be used by cells and tissues.
- TPO test: Commonly used to detect autoimmune thyroid disease by identifying antibodies directed against TPO.
- TSH test: Measures the level of thyroid stimulating hormone (TSH) in the blood, ordered when signs or symptoms of an overactive or underactive thyroid condition is suspected or diagnosed, or to monitor for those conditions.
Free T4 vs T4:
The total T4 test can be affected by the amount of protein in the blood that is available to bind to the hormone, as opposed to the free T4, which is not affected by the protein levels. The free T4 test is considered to be a more accurate reflection of thyroid hormone function and in most cases, its use has replaced the total T4 test.
Additional Tests That May Be Helpful, and Why...
- Antithyroglobulin antibody (ATA) test
- Antinuclear antibody (ANA) test
- 25-Hydroxy Vitamin D
- Reverse T3 (RT3)
Antithyroglobulin antibody (ATA) test: Even though symptoms of thyroid disease can go unnoticed for many years, blood tests can detect two primary anti-thyroid antibodies (thyroid peroxidase antibody (TPOAb) and thyroglobulin antibody (TGAb) decades before a change in the TSH levels. Therefore, ATA (as well as TPO) screening is a very effective diagnostic tool that can be used to screen for thyroid problems in advance of symptoms.
Antinuclear antibody (ANA) test: This test detects autoantibodies which may indicate the presence of an autoimmune disease; however, this is not a disease-specific test. If the test is positive, your doctor will then run more specific tests.
Folate/B12: B12 and other B vitamins play an important role in managing thyroid hormones. B12 deficiency is quite often found among those with hypothyroidism. Because research has found that many vitiligo patients are deficient in B12 and Folate, it’s wise to monitor your B vitamin levels.
Reverse T3 (rT3): (associated with hypothyroidism) is an inactive form of T3 that is produced in the body particularly during periods of stress. Under normal conditions, T4 will convert to both T3 and rT3 continually, and the body eliminates the rT3. Under certain conditions, the body conserves energy by converting T4 into RT3, an inactive form of T3 incapable of delivering oxygen and energy to the cells. The RT3 test must be done at the same time as free T3. The Free T3 should be 20 times higher than the RT3 to be within a healthy range.
25-Hydroxy-Vitamin D - also known as 25(OH)D:Vitamin D is another area of deficiency for many vitiligo patients, and has also been found to be associated with impaired thyroid function and autoimmune thyroiditis.
Thyroid Dysfunction and Cholesterol Levels
Your body depends on thyroid hormones to regulate cholesterol, as well as to break down and rid the body of low-density lipoprotein (LDL), known as the “bad” cholesterol. A high level of LDL is one of the major risks of cardiovascular disease and can lead to a number of serious health problems.
Underactive (hypo) thyroid function causes the body’s metabolism to slow down, which has a direct effect on the body’s ability to clear cholesterol from the bloodstream, resulting in an increase in LDL and triglyceride levels. It has also been noted that even slightly low thyroid hormone levels, known as subclinical hypothyroidism, can raise LDL cholesterol.
Overactive (hyper) thyroid function results in an increase in metabolism, which can cause your body to burn cholesterol more quickly, resulting in a drop in the LDL and triglyceride levels.
Recommendations from thyroid dysfunction research indicates that patients with abnormal levels of LDL, whether too high or too low, as well as patients with unexpected improvement or worsening of their lipids (cholesterol and triglycerides), should receive thyroid screening, specifically including TSH testing, as elevated TSH levels can raise LDL cholesterol before thyroid hormone levels reach abnormal levels.
Research, Facts, and Recommendations
The risk for those with vitiligo of developing AITD disease has been found
to be 2.5 times higher than in the normal population.
The risk of developing elevated thyroid antibodies has been found
to be greater than 5 times higher than in the normal population.
It’s possible that “thyroid autoimmunity might play an important role
in triggering and maintaining the depigmentation process of vitiligo.”
Source: 2015 review of vitiligo and thyroid diseases conducted in Florence, Italy
Review recommendation: Vitiligo patients should be screened for AITD
The following symptoms may indicate an increased probability of developing AITD:
Higher body surface area of involvement (widespread vitiligo)
Experienced stress as an onset factor
Family history of AITD
Duration of disease: The risk of developing AITD doubles every 5 years after a vitiligo diagnosis.
Source: 2013 Belgian study of 700, and French study of 626 of non-segmental vitiligo (NSV) patients
Recommendations from both groups: NSV patients with any of these symptoms
should be regularly monitored for thyroid function and thyroid antibodies.
There is an increased incidence of AITD among pediatric and adolescent vitiligo patients
Source: 2013 study performed in the Netherlands on 260 pediatric and adolescent vitiligo patients
Study Recommendation: Screen for thyroid function and antibody levels
in all pediatric patients with non-segmental vitiligo.
Even for the professional, understanding thyroid disease can be very complex and challenging. However, research is clear on the topic of increased incidence of autoimmune thyroid disease among those with vitiligo. Research also confirms that the earlier the diagnosis and treatment, the better the outcome.
As noted in the opening of the article, the most effective health strategy is a proactive approach, which requires being informed. Being aware of your health, signs and symptoms to be aware of, and most importantly, what to report to your doctor to help him/her make the best diagnosis, will help you maintain control of your health.
5 Foods that May Help Ease Hyperthyroidism Symptoms
Hypothyroidism Diet Plan
Additional Diagnostic Tests
Editor’s note: The information in this article is for the purpose of information and is not meant to be a substitute for medical advice, diagnosis or treatment. Please consult your own physician or healthcare provider for personal recommendations with respect to your own symptoms.
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What's On Your Mind?
Q. How do you Cover Vitiligo on the Hands?
I am a (male) attorney with vitiligo. My line of work requires a great deal of hand shaking. Do you have any information about a natural looking cosmetic product for the hands that won’t wash off or smudge?
- There are multiple cosmetic options for the hands, though the ones that don’t wash off will likely require advance planning and application.
The most popular and easiest to access would probably be the dihydroxyacetone (DHA) based sunless tanners. DHA is a sugar that interacts with the dead surface cells in the outermost layer of the skin to temporarily darken skin color. The coloring doesn't wash off, but gradually fades as the dead skin cells slough off. In most cases, the color is gone after five to seven days.
Back in the early days, many of these products turned the skin a very orangey color, which gave them a bad reputation. However, many advances in recent years have not only reduced the orange, but have added multiple shades and colors. They’re also available in many different formulations such as lotions, gels, liquids, sprays, mousses, and wipes, and can be purchased in drug stores, big box stores, and online.
Another option would be an airbrush product. These are typically applied with a spray gun attached to a container of the cosmetic product, and require some type of compressor or propellant.
There are businesses that specialize in this line of cosmetics and provide the service exclusively at their establishment, as well as those that provide the color matching, training, product, and equipment for home use. There are also home cosmetic airbrush systems (kits) available for purchase online, as well as commercial “airbrush sprays” available in aerosol cans not requiring any additional equipment.
These products are available both with and without DHA. A nice benefit of this product is that it is water resistant, so it does not smudge or wear off, but can be easily removed at the end of the day with a make-up remover. If you use an airbrush product that also contains DHA, then after removing the airbrush product, the DHA tan will remain on the skin as discussed above.
Medical News Updates
Highlights of recently-published medical
articles on vitiligo and its treatments
Drug Used For Other Autoimmune Disorders
Found Effective For Vitiligo
The authors of a recent (in vitro) study conducted in Beijing, China wanted to know if Hydroxychloroquine (HCQ) could protect melanocytes from autoantibody-induced disruption.
Hydroxychloroquine (HCQ), sold under trade names Plaquenil, Axemal (in India), Dolquine and Quensyl, is an immunosuppressant used in the treatment of many autoimmune disorders.
In this study, anti-melanocyte antibodies were obtained from the blood serum of 32 patients with progressive (active) generalized vitiligo (GV). The authors noted that the concentration of autoantibodies in those with GV was significantly higher than in the controls, and especially for the GV patients having vitiligo on more than 10% of their body.
The study found that when HCQ was added to the serum samples, the autoantibody-antigen process was disrupted, and the antibody-dependent cytotoxicity effects were reversed with no significant toxicity to the melanocyte cells.
The study authors concluded that HCQ may be a promising treatment for vitiligo.
Eye Drop Found to be Effective Vitiligo Treatment
When Combined with Mid-Strength Topical Steroid
In our Fall 2011 Newsletter, VSI first reported on the eye drop bimatoprost 0.03% (brand names Latisse, Lumigan) showing promise as a vitiligo treatment. A new proof-of-concept study has now been carried out by Dr. Pearl Grimes in Southern CA. This study on non-facial areas of nonsegmental vitiligo patients combined bimatoprost with the topical steroid mometasone furoate cream 0.1% (brand name Elocon).
Patients were placed in 1 of the 3 following treatment groups for a period of 20 weeks.
- Those only using bimatoprost (monotherapy)
- Those using bimatoprost plus mometasone
- Those using mometasone plus a placebo
46% of the bimatoprost plus mometasone group showed an overall response compared to only 18% in the bimatoprost monotherapy group. Patients in the mometasone plus placebo did not respond.
Dr. Grimes concluded that bimatoprost used with mometasone or alone provided greater pigmentation results than mometasone alone.
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Research & Clinical Trials
Vitiligo Research Study in New York City.
Have you been diagnosed with vitiligo?
Would you like to take part in a research study
to help those who have been diagnosed?
We are looking for both healthy volunteers and persons diagnosed with vitiligo to take part in a research study.
The biology of vitiligo is poorly understood and while there are many treatment options, many carry the risk of side effects or are only temporarily effective. We are performing a study to improve our understanding of the biology of vitiligo. Subjects will be asked to come to 2 study visits. We will be collecting skin samples from both patients diagnosed with vitiligo as well as healthy adults for this study.
We will compare pigment cells from the two groups to identify differences that may contribute to progression of vitiligo. This information may allow us to develop improved treatments for vitiligo.
Study visits will take place at:
The Dermatology Clinical Studies Unit
NYULMC Ambulatory Care Center
240 East 38th Street, 11th Floor
New York, NY 10016
For more information, please contact:
Pilot Study In Boston, MA.
Open-label Pilot Study of
Abatacept for the Treatment of Vitiligo
Principal Investigator: Dr. Victor Huang
Brigham and Women’s Hospital Clinical Research Program
221 Longwood Ave. Boston, MA 02115
Abatacept has been shown to decrease T cell activity and reduce symptoms associated with rheumatoid arthritis. Similar pathways have been shown to be involved in vitiligo.
This study is seeking adult patients with active vitiligo to receive 24 weekly self-administered injections of abatacept, to see if the vitiligo lesions stop spreading, and start to repigment.
A 32 week follow-up visit will be performed to evaluate secondary endpoints as well.
Must be over the age of 18
Must have actively progressive vitiligo (defined as development of new lesions or worsening of existing lesions within the past 6 months) covering at least 5% of body surface area
Subjects receiving treatment at the time of screening will be eligible providing they undergo a wash out period prior to starting the study
Women of childbearing potential (WOCBP) must be using an acceptable method of contraception throughout the study and for up to 10 weeks after the last dose of study drug, and have a negative serum or urine pregnancy test result (minimum sensitivity 25 IU/L or equivalent units of HCG) within 0 to 48 hours before the first dose of study drug
Sexually active fertile men must use effective birth control if their partners are WOCBP
Pregnant or breastfeeding patients
Patients with segmental, acrofacial, or universal vitiligo
Patients with evidence of white hairs within the majority (>50%) of their vitiligo lesions
Patients currently on any other systemic biologic medication, current use of Abatacept, or any other systemic biologic medication within 2 months of study
Use of systemic immunosuppressive agent within 2 weeks prior to initiation of Abatacept
For additional study criteria see contact information below.
If you are interested in participating or would like more information:
Contact the Study Coordinator:
Andrea Craft at: 617-525-3161 or [email protected]
Needling Clinical Trial in New Jersey
Assessing the Efficacy of Needling
With or Without Corticosteroids in the Repigmentation of Vitiligo
Babar Rao MD
Rutgers - Robert Wood Johnson Medical School
1 World’s Fair Dr, Somerset, NJ.
Needling is an office-based procedure that transposes healthy, pigmented skin cells to depigmented areas using a needle. This trial will investigate the use of needling to treat vitiligo. It will compare needling alone to needling with corticosteroid.
- Ages: 18 – 89 years
- Patients with 3 or more localized patches of stable vitiligo
- No prior treatment or had failed previous vitiligo treatments.
Exclusion Criteria:Those with the following will not be eligible:
- Unstable vitiligo (no new or changing lesions in past 6 months)
- Allergic to triamcinolone
- Using systemic treatments
If you are interested in participating or would like more information:
Contact: Aida – 732-235-7765 or Danielle - [email protected]
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