June 13 has been declared International Albinism Awareness day by the UN to acknowledge the unique struggles of people living with albinism and help raise awareness and support from the general public. There is little to no awareness of albinism in Botswana – people living with albinism live like ghosts – largely ignored in their communities. I was shocked to find that Botswana has no laws in place recognizing the special needs of people with disabilities or protecting their rights. When no disabilities at all are recognized then you can imagine how difficult it is for people with albinism to get assistance for their special needs. So although the lives of people with albinism are not as overtly threatened as they are in other parts of sub-Saharan Africa – life as a citizen with albinism in Botswana is really challenging. I honestly thought disability rights were almost universal – but there are still numerous countries that do not have any specific laws protecting the equal rights of people with disabilities.
Albinism was not even on my radar prior to moving to Botswana. I had pretty much zero experience with the condition. But you can’t work in dermatology here without being moved into action by the plight of patients with albinism. I have never seen such a level of sun damage and skin cancer – even working at the VA in the US. Multiple huge aggressive tumors on such young people. Even kids in their 20s having eyes removed and large chunks of their face mutilated because of how advanced the tumors are at presentation. Horribly shocking and heartbreaking.
But even more than the health challenges, what bothers me the most is the emotional affect of my patients with albinism. So many have this withdrawn sullen flat affect, like they have completely given up on themselves and their life. It is tragic and at times unbearably painful to witness. My take has been that because they feel no one in society cares about them, they have decided to just give up on themselves too. I sense that many feel as though they are doomed no matter what they do. I have found that few have any idea about what their condition actually is, what sun damage is, what skin cancer is and that it could be prevented by protecting themselves from the sun. Sunscreen is unheard of to many. Those that wanted to use sunscreen can not get it because of how expensive it is to buy in Botswana. The government of Botswana buys a small supply of sunscreen for patients – but since anyone with a prescription can get it – the supplies are mostly take by people who don’t need it (like patients who want sunscreen for themselves to make their skin lighter).
Getting sunscreen for these patients has been my number one goal for my time in Botswana. I put together a plan and was awarded a Skincare in Developing Countries Grant from the American Academy of Dermatology to work toward this goal. My initial plan was to actually make sunscreen locally. Inspired by the KiliSun sunscreen made by the Regional Dermatology Training Center in Tanzania – I wanted to create a local sustainable method for sunscreen production. Through lots of research, experimenting, trial and error (which needs to be the topic of its own blog) – I found that the most cost effective solution was buying bulk sunscreen and packaging it locally. I have been personally packaging and dispensing sunscreen to my patients with albinism over the past 9 months. Plans are to try to convince the Ministry of health of Botswana to take over my sunscreen program. I am hoping to have some good news to report on that in the next few months….
So back to International Albinism Awareness Day. It had never been truly celebrated in Botswana – and pretty much no one had ever even heard of it. This was the perfect event to spearhead all of my goals for albinism care in Botswana – increasing public awareness with a public service campaign, creating a registry of patients with albinism, offering education on various medical and social welfare topics, providing skin and eye screenings, skin cancer counseling, and providing sunscreen/sun hats/sunglasses along with sun protection counseling. Planning all of this could have been a full time job for multiple people. I was crazy to take it on but I knew it was something I had to do. The chance to do things like this are the reason I live in Botswana….creating something that actually makes a lasting impact on people’s lives.
Thank goodness I had a lot of passion driving me to succeed or I would never have made it through the event. This is actually one of the hardest things I have ever done . If they haven’t experienced it first hand, there really isn’t a way to explain to someone the frustration of trying to organize something in Botswana. I honestly wish I had a video camera with me to document the insanity of the process! But I will save it to say that I learned a lot and will be much wiser the next time I try to embark on organizing and planning anything here!
A large portion of people living with albinism in Botswana are scattered throughout rural areas so it was a big challenge to get transport and accommodation for them to come down to the capital. My biggest fear was that the whole thing would just be a disaster and all these people would have made long trips down to Gabs for nothing!
However, we pulled it off! Everyone banded together and did their part to make it a success. We set up 3 tents for skin screenings and between myself, a medical officer, derm resident and a Cuban dermatologist – we screened 152 patients! I put my husband in charge of the sun protection counseling station, and with the help of some nurses from the hospital, he dispensed sunscreen, a hat and sunglasses to everyone, along with a handout and counseling on sun protection. We got two eye doctors to volunteer to provide vision screenings. We did HIV screenings. We had a series of educational lectures and personal stories from people living with albinism. We had an awareness march on the parliament to try to demand that they review legislation to give people with disabilities more protected rights. Music was performed by artists with albinism. We had a fashion show to showcase people with albinism wearing sun protective clothing designed to fit in with different weather/social settings.
The auditorium was full! I had no idea so many people would show up in support! Even members of the parliament came and for the first time learned about albinism and what it is like to live with the condition in Botswana. All day long the radio was full of announcements about the event. We really made an impact! For once people were paying attention to albinism and making an effort to understand it.
I wish I had more time so sit back and enjoy the event….but planners don’t really ever get this luxury (and I’ve grown used to being in this position). I don’t think I stopped moving from 5am to 11pm and I was super panicked the whole time worrying that we wouldn’t be able to complete skin screenings on everyone before dark. Miraculously we finished just in time to be able to make it to the evening events.
After the main event during the day, we had a fundraiser dinner gala. Numerous major businesses and parliament members attended. We raised over $10,000 for the Albinism Society of Botswana (and this is A LOT of money in Botswana). The evening ended with traditional dancers leading a congo line through the dining hall – it was awesome!
I hope this is the first of many events to promote support for people living with albinism in Botswana. I am so grateful for everyone who came together to make it happen.
I especially would not have been able to do it without Garrett who really stepped up to help everything come together in the last few days and during the event. I was so glad that he finally got a chance to see first hand what my job is like and why I work so hard for my patients. I am constantly trying to work on so many different projects to build and improve different arenas in Botswana – but there are so many setbacks and it is rare to have a tangible success. I continually feel like I am just throwing darts at a dartboard trying to see what will stick – thank god something finally stuck! I will always be grateful to have been able to make a lasting impact in Botswana with this albinism event.