Vitiligo is a chronic skin disease that is distinguished with depigmented patches on the skin. It is believed to be an auto-immune disease that attacks melanocytes in the skin. These melanocytes are responsible for the natural pigment of the skin. When attacked and destroyed by the immune system, it causes milky-white patches in some spots or larger area of the body. To explore more about the topic, you may participate in vitiligo clinical trials or learn online. In fact, there are many community groups online and offline as well as skin organizations raising awareness for the advocacy and inclusion of people with vitiligo.
Support groups advocates research around the topic centered with love and understanding. Often these groups and organizations educate people about vitiligo and creates space for vitiligo interactions. They also struggle to encourage medical research for finding complete cure of vitiligo. Moreover, the impact that it exerts on the mental health and emotional wellbeing and the catastrophic identity crisis that one my encounter is beyond explanation.
Hence, it has become imperative to advocate for the cause and welcome people with vitiligo with open arms. Understanding their mental state and devastating identity crisis, it is essential for others to help them cope up with it through cordial nature and warm surrounding.
Celebrating diversity and uniqueness, empowering self-esteem, building their confidence, boosting their morale—shows more of us as individuals than the people with vitiligo. But what are the potential ways to do so? Well, to discuss this and more around the topic, keep skimming through the blog!
Dealing with Emotional Turmoil
It takes courage to accept oneself with a distinguishing skin disease, that too in a society which is majorly governed by cultural beauty norms, race, caste, creed, status etc. Addressing the emotional impact vitiligo can impose on your health and helping to cope up with it is commendable. The responsibility lays on both the society as well as the individual dealing with vitiligo to de-stigmatize the disease, embrace and accept it. Raising awareness, equipping educators, and funding medical research team to conduct necessary research can directly or indirectly help in creating a safe space for the people dealing with vitiligo.
How to Advocate for the People with Vitiligo?
Vitiligo advocates help in improving the lives of people living with this skin disease. Sharing out loud their problems, talking about their mental health, and bringing positive changes in both national and international community. Even though just 1% of the population around the globe are living with vitiligo, it is crucial to raise awareness for them so that the rest 99% of the population can accept them cordially (Living Drappled, June 2018).
But what are the potential ways to advocate for them? Since we live in an era where everything is now encapsulated in a nutshell, thanks to the access and exposure to technology—it has become easier than ever before to be vocal about the subject and reach many.
- The Social Media Warrior; with everything now at your fingertips, you can simply jump onto the wagon through hashtags, a self-experienced story or even with mere knowledge revolving around vitiligo. Spreading word and raising awareness about this condition was never this easy before.
- Hosting Fundraiser; one of the barriers in vitiligo research and proceedings are the non-sufficient funds. You can host a fundraiser for the cause and help organizations working for vitiligo. Bake sell, fundraisers, or even support groups in your vicinity can help you with collecting funds.
- Vitiligo Flyers & Shirts; wearing vitiligo shirts and distributing flyers can be the simplest form of advocacy. You can simply wear a vitiligo shirt and answer few questions eliminating misconception and myths. This indicates either you have vitiligo or love someone who has it. Hence, spreading knowledge and educating people about it for a more welcoming future.
- Sharing First-Hand Experiences and Organizing Events; by telling first-hand stories and experiences you can simply burst the bubbles, shed light on the topic, clear misconceptions, and hope for a better future that’s favourable for people with vitiligo. Also, speaking in public and organizing events and seminars that discuss vitiligo, its symptoms, pressure faced, and potential consequences can help abundantly. You can either be in the organizing committee or be the motivational speaker.
Connect with People Who Understand
People living with vitiligo can come together on a single platform to raise awareness, seek advice, shed light, share stories, and motivate other having the same condition. This may help the endure and subsist with disease. Accepting each other and accepting oneself really is the key to combat such situations.
Potential Barriers in Raising Awareness
There are many clinical trials conducting research on this skin condition. Research center in Boston and other research spaces have previously worked along the same lines. However, there are few barriers that obstructs the flow. Some of them are discussed briefly here:
Patient Barriers—due to limited awareness and resources, patients may feel reluctant in either being vocal or participating in clinical trials. This also highlights their not-so-trustworthy approach with the medical field. Also, lack of diversity and limited research on different skin reacting differently to the same skin condition poses potential gaps. Then, some patients may lack resources or transportation to commute to the clinical trial centers. Consent forms that are too lengthy also can also be added to the list of barriers. Lastly, the forms are available in limited languages—hence, proving to be yet another barrier.
Lack of Community Trust—lack of community trust is indeed an obstacle to overcome, hence taking measures accordingly can help in a consistent thorough study. Cultivating community trust through providing resources, educating about the disease, and engaging all members equally is crucial. Establishing strong relationships by partnering with renowned organizations can help build the trust amongst members and staff. Also, opting for easy-to-use apps and being transparent throughout the study can also be counted in the list.
Clinical Trial Barriers—having inadequate knowledge about the clinical trials and incorrect methodology can be a huge step back in the domain. More training courses are required to train both the physicians as well as the staff to work on the same page and with great focus. Also, lack of research fundings plays a vital role in conducting clinical trials. Shrinking budgets for research has left a gap in this domain.
Takeaways
For those living with vitiligo, it is important to come to acceptance first. Raising awareness, loving yourself first and then creating a space where others are welcomed too could be your pathway to focus on. Vitiligo is an internal battle and a tumultuous state of identity crisis and self-love. So, embrace yourself and put end to isolation and self-pity!
