The Mental and Emotional State of Vitiligo...
Andre Joachim is our Vitiligo brother from Chicago and has been a member of our community for some time now, RALLYING with us both in Washington, DC 2016 and Detroit 2017.
Andre is a LPC (Licensed Professional Counselor) and NCC (National Certified Counselor) who is currently working on his PhD at Northern Illinois University and upon completion of his degree VITFriends is hoping to work with him to help the members of our community.
Here's our first REPORT from Dr. Joachim:
I would like to ask the entire Vitiligo community to work with me in the future, when embarking on research exploring complexities of our emotional wellness. I have been noticing common occurrences with members of the vitiligo community, myself included. Most people think that vitiligo is only a cosmetic issue, but there are other autoimmune disorders that have an emotional component and impact on the individuals that are predisposed to the symptoms. It is my suspicion that the same may be said about vitiligo and there may be some dysregulation of emotions associated with vitiligo, although there is limited to no research on these issues. I would like some assistance from the vitiligo community to explore these concerns, having witnessed the variances of emotions that has been exhibited by some of the members of our community, which yet again includes myself. If this is the case, then we need to explore areas of research to help us understand the complexities of vitiligo that may have not been considered.
Having lupus, an immunologist once told me that when you have lupus one will have debilitating ranges of emotions. When one with lupus feels happy, they feel really happy. At times that happiness can be felt physically, and it may be felt more intense with the onset of lupus. He continued to explain that the same emotional dysregulation can be experienced with feeling of sadness. He explained the sadness can be more intense, with people who have lupus versus people who do not have lupus and takes on a physical debilitating incongruency. In that case people exhibiting those ranges of emotional dysregulations can take on physical manifestations associated with the sadness they are experiencing. It is my suspicion that those of us who have vitiligo may be exposed to the same dysregulation of emotions.
I have been in contact with many people from our community that have been experiencing a range of emotions, which can be distracting and become problematic to one’s everyday level of functioning. Some of us have secluded, isolated, and create barriers amongst family or friends because of the severity of emotional responses. It is my belief that the psychosocial impact of vitiligo needs to be explored and investigated, so I am hoping to hear your stories of situations where you may have expressed yourself inappropriately or with emotional intensity.
Vitiligo also known as leucoderma, which simply means white (leuco) skin (derma), i.e. a disorder where the skin loses its normal coloration. It is also medically known as achromia, which means loss of color. Vitiligo is pronounced Vit-ti-li-go (like saying...Little I Go/Vitiligo)
Basically, Vitiligo can hardly be called as a disease but a skin-disorder that has more social than medical significance, especially amongst the dark skinned people. Due to destruction of the melanin (pigment) cells due to lesser known processes (largely what is called as an auto-immune disorder) the normal skin starts loosing pigments from various parts of the skin, in a varying speed and extent. Our clinical experience based on the treatment of over 4500 cases, suggests that there is a strong genetic factor in the background of most cases, especially those who have extensive vitiligo or those who have vitiligo affecting the finger-tips, toes, lips or the genitals. The indication of strong genetic factor is observed in the form of family history of one or more of the auto-immune diseases such as vitiligo, diabetes, hypothyroid, alopecia areata, cancer, rheumatoid arthritis or allergies.
The vitiligo sufferers are observed all over the world, including the white skin communities. However, epidemiologically most cases are recorded in India (8.8%) and Mexico. Estimated 1-2% of the Americans have vitiligo as per the survey made by the American Academy of Dermatology. Males and females are affected equally, inclusive of children age group. It may begin at any age. Childhood vitiligo is not uncommon.
What Research Is Being Done on Vitiligo?
For more than a decade, research on how melanocytes play a role in vitiligo has greatly increased. This includes research on autologous melanocyte transplants. At the University of Colorado, National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS) supports a large collaborative project involving families with vitiligo in the United States and the United Kingdom. To date, over 2,400 patients are involved. It is hoped that genetic analysis of these families will uncover the location--and possibly the specific gene or genes--conferring susceptibility to the disease. Doctors and researchers continue to look for the causes of and new treatments for vitiligo.
What do you see when you see me?
What are you looking at?
Are you looking at me?
What's with those EYES?
Do I look like you?
Are you curious?
Do I make you sick?
ARE you NEXT?
.....You should have questions for the medical community - Do you? Do you care to know? Could YOU...?
Here's a Talk with a Doctor.....(Los Angeles, CA)
Randy: What do YOU believe to be the root cause of vitiligo?
Dr_Grimes: Well, I view vitiligo as a heterogeneous condition....there are multiple causes and pathways that can cause the destruction of melanocytes (pigment cells).
Dr_Grimes: For MOST patients, perhaps as high as 50 or 60%, it is auto-immune based. You can inherit the tendency or susceptibility...just like other auto-immune disorders.
Dr_Grimes: But there are also environmental triggers. I think that this clearly is a cause for SOME people. Exposure to certain environmental chemicals can cause vitiligo...drugs can induce vitiligo...such as a response to penicillin and other drug reactions.
A Questionnaire from: Vitiligo Support International
Here are my personal answers:
1.) Tell me, what’s been your personal experience with vitiligo?Not good. Having the cashier at grocery store put my change down on the counter - hurts.
2.) Think back to when you were first diagnosed with vitiligo, what was that like?
It was awful. Just to think of myself as disfigured - hurts.
3.) How can one cope with the emotional and psychological aspects of vitiligo?
Dive into GOD and the things that pleases him, that’ll work.
4.) How would you describe the obstacles of living with vitiligo?
HARD, it limit my going out, but having a loving family and great friends is so key.
5.) What options are available for you – in terms of support?
There are really NO support locally that I have found. So I have put together this website and it has been a GREAT source of strength. Also, having Vitiligosupport.com and my church family, they are my biggest support
Vitiligo draws out POETRY:
My HEART Speaks is our presidents very first collection of poems from her pain of Vitiligo, and she would love for you to have a copy.
Purchasing a copy of this book, for ONLY $18.00 is one of the ways that you can support this web site.
Brand NEW - Second Edition and available now. "My HEART Speak."
This was also recorded live at the Weston Public Library, Weston, MA.
Valarie was honored with a night of poetry reading and book signing. Valarie's work can be found in the "Weston Reads Poetry Anthology 2005. pg 115" located in the Weston Public Library.
Here is the link to your Book, My HEART Speaks: http://www.lulu.com/shop/valarie-molyneaux/my-heart-speaks/paperback/product-20308224.html;jsessionid=08D060C526D5599379F5D56B09C3E2A3