SushAmita Pradeep Jain, Founder & Volunteer, SupportVitiligo was invited for a panel named ‘Vitiligo Treatment & Support: Beyond Medication.’ The panel was moderated by dermatologists, Dr. Rohit Batra & Dr. Sumit Gupta. The discussion revolved around the psycho-social aspects, perspectives, and the needs of persons with Vitiligo and how dermatologists can support in their respective capacities across the country. This webcast was made available to 500-700 dermatologists across India. Below are the pointers which were discussed. These pointers were derived from the personal experiences (of SushAmita) and the experiences/ observations/ inputs from her interactions with the members of our SupportVitiligo Network. There were suggestions expressed to the dermatologists and we look forward to the fruition of the same. Pointers included are from the online and offline discussions with the dermatologists.
1| What social challenges do persons with Vitiligo face in their lives?
Focus area| Depends on various factors like the social strata, geography, and the support system of the person with Vitiligo. Generally, persons with Vitiligo face a lot of sympathies, stares, and uncomfortable comments. There is hesitation from people in terms of shaking hands, getting along, sharing food, etc. Youngsters with Vitiligo even face challenges in finding room for rents in some places. We have observed this more in rural and semi-urban areas while in Urban areas it prevails to a lesser extent compared to the former. There are multiple instances, where people have faced challenges in maintaining customer-facing (e.g. at the reception) roles or switching between multiple businesses as a result of psychosocial stress/ stigma faced by them during their interactions with people during work. While on the other hand, self-advocacy or proper awareness towards the skin condition has led to normalizing any sort of stigma related to that in other instances.
Suggestion| Dermatologists from their end can sensitize/ spread awareness in their circles personally and professionally thus clarifying myths about the skin condition. On the other hand, while counseling persons with Vitiligo they can encourage them to be self-advocates and spread awareness on their own capacity as well. If the Government can release notification debunking myths, especially for the rural then the impact and stigma can be addressed to a major extent. As a response, we got to know that dermatologists had already requested the government to include Vitiligo under the non-communicable category (snapshot below). In addition, the suggestion was to spread Vitiligo awareness at higher levels and include voices of people working in senior positions for the government as well. The usage of the right language and representation of Vitiligo was also emphasized. Even awareness in schools and voluntary projects(focussing on Vitiligo) for students was proposed, as awareness at the initial level is very crucial.
2| Do you think the counseling/support that a vitiligo patient deserves is available? How can Dermatologists help?
It depends on the dermatologist and the process they generally follow. Some dermatologists include counseling as a part of their consultation process while many are time-bound and focus on the treatment aspect only.
Suggestions| Dermatologists can allocate at least a small amount of time in understanding the person with Vitiligo’s psyche and emotional condition by conversing with them for some time. In some cases, the family members of the person with Vitiligo might need to be talked to, as they might be in more stress. E.g. Parents, Spouse, Siblings, In-laws, etc. This will also help in treating them better. In addition, persons with Vitiligo & parents can join our support network (on Telegram App), where they can share and network with people undergoing the same journey.
3| How does SupportVitiligo (Platform & Support Network) work?
We played our short video focussing on our journey, impact (so far), and the work we do.
4| Are Vitiligo patients easily exploited by people who give false hopes?
Yes, happens in most of the cases, especially in the initial phase, post-diagnosis. Nowadays it happens a lot online. If bogus ads get posted on any of our social media platforms then we keep removing them as soon as they come to our notice. We moderate our support networks as well and also discuss with our members to not fall into any traps of unsolicited advice which involves money.
Suggestions to us| We were asked if we can take legal action on such fake/bogus ads or people spreading ads. In our reply, we conveyed that we are focusing on the aspects relates to awareness and providing a support system and are primarily volunteer-driven. Legal processes and aspects need effort and expertise, which we may not have an aptitude for.
5| How do the Vitiligo Support Networks (Groups) function? Describe a typical meeting of a Vitiligo Support Group?
The support network is voluntarily driven by SupportVitiligo (SushAmita) in order to cater to the needs of persons with Vitiligo and parents of children with Vitiligo. It was initially on WhatsApp then we moved on to Telegram (App) in order to provide number privacy. People share their journeys, treatment options, emotions, lifestyle habits that might have helped them, etc. We have posted the info on our social media platforms (poster below). So people get to know and join us, post answers to a basic questionnaire. Whenever a member joins our network it mostly starts with enquiring about treatment and gradually when he/she becomes comfortable with the group, conversations start flowing in the group. We have online meetups once in a while and have a good time interacting online and even our conversations in the groups. Both the Support Networks are active and acts as good support according to the members of the Support Networks. We encourage the sharing of genuine/reliable information to our best possible. based on the needs of the members.
6| How can a dermatologist or group of dermatologists in a city help form a Vitiligo Support Group?
Dermatologists can recommend their patients (persons with Vitiligo) to join our support networks/ groups who can utilize it like our existing members. This platform can act as the main group where people can share and discuss any queries related to their journey with Vitiligo. We would like to continue managing it as we have been doing so far. One support network is for persons with Vitiligo and another one is for parents of children with Vitiligo. We also encourage our members to organize state wise/ city-wise meet-ups through SupportVitiligo, based on their need and convenience. So far, we have had a set of meet-ups and Vitiligo awareness stalls in Bengaluru and can facilitate the same in other cities based on the interest of the members of that region. As of now, we encourage online meets and have planned to have it once in a month.
7| How can dermatologists help/support persons with Vitiligo effectively?
We discussed pointers explained in this video.
Suggestions to dermatologists|
– Ask interested patients/ parents to join our support networks respectively.
– Form a network or utilize an existing network of dermatologists across the country and answer to queries of persons with Vitiligo/ parents on a bi-monthly basis or need basis through our social media platforms.
– Provide us with the updated database consisting of details of dermatologists who offer UVB (Phototherapy) across India, thus catering to various aspects including subsidized and free (Govt. based) access to the treatment.
– Cost-effective surgical options if a person wants to opt for any surgical procedure for Vitiligo.
– Focus on overall well being and mental health as an important aspect and include counseling as required for persons with Vitiligo, parents/spouse/ family members of persons with Vitiligo.
In addition, we discussed/requested access to the latest advancements in medicine and research to which we were said that only dermatologists have access to that information and they can pass on that information to us.
8| You have created wonderful videos on Vitiligo awareness. One of the videos talks about the difficulty to find a suitable match for matrimony. How much does this affect the patient’s psyche?
It affects a person’s self-esteem and leads to sympathy in many cases. It takes consistent and continuous effort to see ourselves in the same light as others without feeling that we are different, as it’s natural to feel different due to these experiences and this might also happen with people without vitiligo as well due to various other reasons. We need to normalize perceptions regarding persons with Vitiligo marrying whomsoever they want to marry and avoid restricting marriage between people with the same skin condition only. Dermatologists can play an important role by speaking about real-life stories and facilitating a dialogue with adults with Vitiligo and their parents. Our website has a few real-life stories.
Response from dermatologist| We generally emphasize on an open mindset. There have always been scenarios where we have seen persons with Vitiligo are married to a person without Vitiligo and it is in recent times that marriage between people with the same skin condition is happening. We also make it clear that if a person without Vitiligo marries a person with Vitiligo then in most cases the children do not get Vitiligo as around 85% of the cases do not have a possible family history and the possibility is quite low
9| We have seen that when we counsel the patients that this is a harmless disease and doesn’t affect their ability in anyway, that they should not think or bother about it too much, they often mistake this approach for ‘the treatment will not be effective that’s why he is talking/consoling like this’, and become even more dejected. How do we handle that?
Educating the person about the nature of the treatment, efforts needed from their end, it’s effect, and the minimum duration to see some result, can make the person go through the journey patiently. We may not be able to expect quick results and need to try for a specific time, at least before switching to another treatment. Discuss how that treatment works on the body and what is required from their end to be done. This needs to be done with the person with Vitiligo and also their family members (as required), as in some cases the family is more concerned.
10| In one of your videos, you mention that you reached a point where you ‘Accepted Yourself’. How do you counsel or rather push a person with Vitiligo to reach this state?
Mostly initial days post-diagnosis are tough as the person is getting in terms and it takes time for self-acceptance. This varies from person to person and also the support from their social circles. So support from family and close circles is the primary thing and self-acceptance gradually happens and joining a support network might help. Our members say that the support network makes them feel that they have the support and a virtual family-like atmosphere. The same goes for parents of children with Vitiligo. We try to showcase various vitiligo advocates as well, by featuring them on our social media (Facebook, Instagram) posts through positive affirmations, etc.
11| You interact with a lot of people with Vitiligo across the world. How many of those who ‘accept themselves’, stop all treatment, stop caring about Vitiligo and get on with their lives?
According to my personal experiences, in most of cases, youngsters and parents of children with Vitiligo keep trying all possible treatments and remedies which is quite natural in that phase. On the other hand, the percentage of people who accept themselves is increasing and this happens through their personal journey or when they see others going through the same experience confidently. So, this percentage includes people who have accepted themselves and stopped treatment completely or the ones who have accepted themselves but still trying treatments and are following lifestyle habits to heal Vitiligo. Either way, they are emotionally positive. This also depends on many factors like age, family, demography, the influence of social circles, etc.
12| As we were running short of time, in the end, we discussed some common questions/ concerns related to the representation of Vitiligo.
Why can’t we call Vitiligo a Skin Condition instead of referring it to as a disease and avoid emphasizing by referring to ” person suffering with Vitiligo’ instead of ‘person having Vitiligo’.
Dermatologist’s reply| Vitiligo is a skin condition and can be called so but when people with vitiligo come to us for receipts for reimbursement then we need to use the terms like ‘disease’ and ‘suffering’ as reimbursement is providing in certain cases only. So, that is the reason why such terms become common in usage as well.
What dermatologists had to say!
Ms. SushAmita has done remarkable work in Vitiligo awareness. This engagement with Dermatologists will help in promoting Vitiligo support activities throughout the country.
– Dr. Himanshu Gupta | Consultant Dermatologist | Ghaziabad
The interaction with Ms. SushAmita Jain was both enlightening and enriching to us and Dermatology community as we gained invaluable insights into the psyche and challenges faced by people with Vitiligo. This will go a long way in sensitizing the Dermatologist community about the need for support and psychological aspects of Vitiligo management.
– Dr. Sumit Gupta | Consultant Dermatologist & Vitiligo Specialist|Skinnovation Clinic
It was a wonderful session, interaction with Ms. Sushamita. It gave insights into the thoughts and perceptions of a person with Vitiligo . Every person who approaches us is a patient . Aesthetic Clinics call their patrons as ‘ Clients” . Also reimbursements and insurance claims are settled for health issues of patients and not clients . Hope a better interaction counseling and a 2 way communication is needed for a better outcome of medical treatment .
Looking forward to more fruitful future interactions .
– Dr. Rohit Batra|Consultant Dermatologist | Sir Ganga Ram Hospital
These were the pointers discussed and if you have any further queries you can post them here in the comments section below. We would try our best to get in dermatologists to answer your queries on our social media handles through our LIVE sessions. It also depends on their availability and convenience. To get notified, follow us on Social Media, click here and scroll to the bottom. You can follow us on Instagram, Facebook, and YouTube.
A Blog by SushAmita Pradeep Jain.