A week with Standing Voice

 

IMG_20170324_101438 copyMy quest to learn more about Tanzania’s albinism programs brought me to the Standing Voice organization. It is an NGO from the UK that has created an amazingly integrated community outreach program for skin screening, counseling, low visions screening and support for people with albinism in Tanzania. After the good fortune of finding out about the organization, I set up a skype call with the founders in the UK. We shared information on both sides of our experiences caring for people with albinism. I was amazed at the amount of funding they had been able to secure for their organization and how much community support and involvement they had to run the programs. They in turn were aghast that I had literally no local support for skin care in Botswana!

I wanted to see first hand what Standing Voice was doing at the community level so I arranged to spend 8 days with them during my trip to Tanzania in March 2017. The timing worked out perfect for me to join and outreach campaign in Gieta, Tanzania. I flew into Mwanza to meet up at the base of operations for Standing Voice. They have a beautiful compound with a house, and office overlooking Lake Victoria. All the team members that would be participating in the screening campaign met up here and we left on a bus for Gieta the next day. Although it didn’t appear very far on the map – it took us about 5 hours to get there. We had to take a ferry across lake Victoria then travel slowly on very bumpy and dusty roads.

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Gieta is a small rural village that has only been made well known because it is a major gold mining site. Our screenings took place in a local government meeting hall and we stayed at a small motel down the street. Standing Voice usually does regional skin and low visions screenings separately. This was to be the first joint event to try to offer comprehensive care for people living with albinism. I was excited to be a part of it!

IMG_20170327_135625 copyThe first day was very busy and hectic. We saw about 80 patients but with the associated family members this meant over 150 people coming through the center. People with albinism from across the whole region travelled to Gieta for the screenings. DSC00144Once reaching our center, their day started with a large joint counseling session giving facts about albinism, skin health, sun protection and reviewing signs of skin cancer. Two local dermatologists lead these session. They had both completed a two year course at the RDTC to become community dermatologists. You could tell how much more the patients listened and understood when the physician was from their own community. The community dermatologists were great teachers. They involved the patients in the discussions and even made them demonstrate the correct way to put on sunscreen for each other.

After this counseling session the patients registered. Standing Voice keeps a record of every patient seen with skin screening forms and eye screening forms that are kept in a large database. Then they visited me at the skin screening station for a full skin exam. I treated any precancers with liquid nitrogen and referred them to the nearest dermatology clinic for biopsy and treatment if there was a suspected malignancy. Standing Voice follows up to ensure these patients have the resources and transportation necessary to get to a dermatology center.

Their next stop was the sun protection table. Patients were offered their choice of a pile of awesome sun hats. Then they were given two tubs of Kili sun sunscreen. IMG_20170325_140334 copyThen they moved on to the eye exam station. Three local optometrists worked to screen each patient and determine what prescription or other vision aids they needed. Then they visited the eye care station to be fitted with glasses from a precut supply of spectacles. If their specific prescription was not available that day – they would be followed up locally and supplied with glasses at a later date. They were also allowed to choose from a large selection of sunglasses. Patients were given telescopes and other magnifying aids as needed.

IMG_20170327_155638 copyThe last station was eye counseling. A local teacher with albinism offered instruction on how to use their new visual aids to function in the classroom. He was a very charismatic teacher and I could tell that he had a hugely positive influence on the patients. For the patients to see someone just like themselves in a leadership role had such a positive impact on their self esteem and hope for the future. Without positive role models, its hard to visualize a positive future for yourself!

IMG_20170326_125648 copyAll visitors to the center were offered lunch and assisted with transportation to/from their surrounding village. Some travelled as far a 5 hours to get to the screening center. Standing Voice offers these screening on a rotating basis across the country. They do screenings in each area about once every 3 months. I was absolutely floored by how comprehensive the care they offered was! Truly incredible and life changing for people living with albinism who are often ignored or brushed aside by the healthcare system.

DSC01817I just couldn’t believe Standing Voice could offer all of this for free. What a massive amount of funding it would take to pull off these types of screenings every 2-3 weeks! I was so glad to see that major funding sources are supporting albinism – I just wish I could get some funding for Botswana!

My time with Standing Voice was incredibly enlightening. Although I work with many patients with albinism in Botswana…the scale of those affected is just soo much larger in Tanzania. I have never seen so many severely sun burned babies and toddlers. Just heartbreaking. They really just have no chance in this world without outside intervention.

What Standing Voice is offering them is amazing. Along with supplies and equipment they are getting education – the most powerful tool. They are being empowered to learn how to take better care of themselves. But most of all they are being given hope. Hope of a better future that they never even knew existed. Hope of living a life where they are not doomed to live in darkness and inevitably die of skin cancer. What many people do not know is that along with the day to day challenges of living with albinism – in Africa you also have to add fear of death to the list. Local witchdoctors hunt and kill people with albinism – often children. They use the body parts for ceremonies and “treatments” to cure various ailments or sometimes just for good luck charms. This has created a very lucrative market for the sale of albino body parts. A savage and insanely inhumane trade. Families fear so much for their children’s lives that some put the children into special schools that are protected by military. If you are interested in learning more about what life is like for people living with albinism in Tanzania – watch “In The Shadow of the Sun.” It was filmed by the founder of Standing Voice and was the reason he felt compelled to start the organization.

Words cannot express how much I admire this organization and what it is doing for people living with albinism in Tanzania! So grateful for the opportunity to work with them and learn from their achievements!

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