Arbor Vitae (Strengthen your roots)

Dr. Maya Tulpule is the founder of the Shweta Association, a pioneer Vitiligo Support Group in India.

How did you & your family come to terms with the diagnosis of Vitiligo?

I had my first patch of vitiligo at the age of 9 years and 3 months. My parents & uncle were visibly stressed but they never passed it on to me. The patches started coming all over the body, very fast. The best senior dermatologist was consulted. I was very young to understand the stigma attached to white patches. I did not have pain, fever, headache or any other physical issues so I took it lightly. But deep within. I was rather perplexed about these rapidly spreading white patches.

What motivated you to form the patient advocacy association ‘Shweta’?

I had very good family support. My parents allowed me to pursue my dream of becoming a surgeon. My husband does not have vitiligo and still opted to marry me. I have two lovely children.

I noticed then many unfortunate people are living with vitiligo under stress, social segregation and ostracization with my experience as a vitiligo person. I believe that self-acceptance and family support are most important to improve the quality of life. To spread this message to all the people having vitiligo. I started this self-help support group.

How many people are a part of this association and what has their experience been like?

More than 3,500 people are part of the Shweta Association. Few come for consultancy, few for cosmetic camouflage, and quite a lot avail of our matrimonial services and NBUVB Phototherapy treatment at a very affordable cost. People with vitiligo are mostly frustrated as there is no total cure. The behaviour of the disease regarding the spread or re-appearance of white patches, duration of the treatment and transmission to the next generation is unpredictable. Acceptance of the disease and learning to live with it is the biggest challenge for our counsellors.

Matrimonial Assistance is our most popular activity. In India, 50 % of marriages are arranged by the family. With social taboo attached to vitiligo and the changed looks of the person, it is a great hindrance to marriage. We have facilitated at least 1,500 marriages to date. Cosmetic camouflage also gives confidence at the workplace, during interviews or specialisation. We help people to get jobs. Our Photography units have given access to hundreds of patients for the best treatment at an affordable cost.

What challenges have you faced while addressing the stigma associated with this disease? Do you see any role that the government can play in helping patients with their treatment in terms of affordability?

To tackle the stigma associated with vitiligo we focus on public education and participation. Public awareness programs, where celebrities talk of vitiligo, the yearly Marathon “Run for Vitiligo”, Walkathons, Cycle Rallies, and Participation in Health Exhibitions are organised regularly.

We are active on social media through websites, Facebook, Instagram, and YouTube. Articles in Newspapers, interviews on TV Channels and radio and through our yearly magazine “Rang Manache” (“Colours of Mind”). We encourage our members and esteemed visitors to open up and discuss vitiligo freely. “Nital-Crystal Clear” the award-winning feature film was produced by us in the year 2006.

What has your experience been like with international patient advocacy groups?

I have been associated with various international patient groups since 2010 when the first International Vitiligo Congress was held in Milan, Italy. There is no stigma to vitiligo in European countries & USA access, the best treatment is available and in many countries, expenses are reimbursed. The most sought-after activity or support group is cosmetic camouflage. Financial constraints are not a big issue. The patient members are very enthusiastic and contribute yearly subscription charges. I found European & American pharma companies very generous in funding the patient support group.

In contrast to this, the scenario of Indian patients is pathetic. They are reluctant to contribute or participate in the social activities of the groups. There is no funding or any help from the Government or the pharma Industry.

What message would you want to give to the coming generations in the field of Dermatology?
Skin is the largest organ of the body, which protects us from harsh external conditions like heat, cold, rain etc. Love your skin, love your body.
Self Acceptance and confidence in your own ability are the keys to good life.

For more details about the activities of the Shweta Foundation, read here: https://www.myshweta.org/