Blog #8 : Nakuru
Monday, October 2nd, 2017
Mama and I headed out for Nakuru around 9am. (Mama was my driver/travel buddy today because William had class).
On the way to Nakuru, we got to drive through the Great Rift Valley . The Great Rift Valley runs 6,000 km from Lebanon to Mozambique. Formed nearly 35 million years ago, it is considered the birthplace of humanity. This rift caused all the Great Lakes of Africa to be formed, including Lake Nakuru and Lake Naivasha, which we saw from a distance. The section that we drove though is called the Gregory Rift, within the East African Rift.
It is a truly spectacular piece of this country. We stopped for pictures at an overlook.
We got to Nakuru General Hospital around 1pm and had to wait a little bit for the doctor we were meeting. We met with Dr. Etemesi around 2pm. Dr. Etemesi got her masters degree in dermatology from the university in Moshi, Tanzania that we visited last week. Tanzania has one of the world’s highest numbers of people with albinism, and Moshi in particular has a very high number. For one of the last projects she did to earn her degree, she chose to coordinate an outreach program for persons with albinism in the region. She met and treated over 400 people with albinism during this project.
After finishing her graduate degree, she moved from Moshi, Tanzania to Nakuru, Kenya. When she first moved to Nakuru, she didn’t think there were any people with albinism living in the area because she never saw any and none came to the hospital for treatment. Soon after moving to Nakuru, she met Alex and discovered the National Council for Persons with Disabilities. She received training from the NCPD on persons with albinism, the issues associated with albinism and methods of prevention, education, and treatment. She now uses this knowledge to teach and train other doctors and clinic workers. Dr. Etemesi places the biggest emphasis on two things – the empowerment of education and research and data collection.
Educating on all fronts – educating people with albinism about themselves, educating the public about albinism, and educating healthcare workers to be informed about how to provide preventative care and treatment to people with albinism. She wants people with albinism to reach a point where they are empowered enough to live independent and successful lives – to get information about their condition early, know how to take care of themselves and their skin, how to get their own sunscreen, how to identify precancerous spots, and to only come to the hospitals for quarterly/annual scheduled check ups or if there is a serious issue (which with education and preventative measures, should, in theory, rarely happen).
Because she feels that people with albinism should not have to go to a bigger city hospital just to get their sunscreen, she has set up a regimented clinic schedule specifically for people with albinism. On the first Tuesday of every month, her clinic is open for people with albinism. She keeps records of each person that visits the clinic – their reason for coming, whether they collect sunscreen or receive treatment, the information of that patient’s relatives, and much more. She has set up a system where the relatives of a person with albinism can come and pick up sunscreen, and she records who does the picking up to hold them accountable. Another practice she tries to follow is seeing school children only once every school term.
In the world of research, she feels that hardly any significant research has been done on the genetics of albinism and the condition’s different types and manifestations. She suggests a nation wide study of people with albinism should be done, specifically to record, research and discover all the different types of albinism. There are two types with which I am familiar, but she listed at least four or five different types. Each type manifests differently, and therefore needs different care, preventative measures, and treatment. For example, ocular albinism is a type in which the skin has melanin, but the eyes do not. Because of this, people with ocular albinism do not have issues with their skin burning or forming cancerous growths, but they have the same issues with their eyes that are associated with more commonly known types of albinism – shaky eyes, poor vision, short-sightedness, etc. A type that Dr. Etemesi told me about that I had never heard of was xeroderma pigmentosa. This is where the skin appears to have melanin, but the nuclei of all the skin cells do not have any UV protection on them. These people don’t know anything is different or “wrong” with their skin, so they act and work as any other dark-skinned person would. However, because of the condition, their skin burns, and cancerous growths form very rapidly and early on. There needs to be research done on these different types so that preventative methods and measurements can be catered specifically to the needs of that particular type of albinism.
Another thing she would like to research further, which I found really interesting and had not thought about as a research endeavor, is studying the community’s beliefs and views of people with albinism. Ideally, she would like to go around the whole country to hear each community’s views on albinism, people with albinism, and what they know about albinism. The reasoning behind this research, she said, would be to start truly changing the stigma surrounding people with albinism. In some places, people believe it is a curse from a higher power; in other places people think it occurs because the woman/mother slept with a foreigner, etc. etc.; the list of crazy reasons goes on and on. “There’s deep-rooted reasons why people believe these (crazy) things. You can’t change these beliefs if you don’t know the reasoning or history behind the belief.” Knowing how each region of the country views people with albinism, you could specifically tailor education towards changing those beliefs and stigmas.
The most immediate thing that Dr. Etemesi hopes to see soon is the creation of an educational pamphlet that can be sold or distributed to people with albinism, to schools, to clinics, to hospitals, to anyone and everyone – something that spells out the facts of albinism in laymen’s terms so that everyone can understand.
I was inspired and encouraged by our conversation.