Tuesday, September 19th, 2017 (Train to Mombasa, home visit)
We left the house around 6:30 in the morning to give us enough time to drop Sialo off at school and make it to the train station before 9.
This train system is brand new – they were starting construction on it the last time I was in Kenya in 2013. $7, 480 kilometers and 5 hours later, you’re in Mombasa.
We got into the Mombasa train terminal at 2pm on the dot. After clearing through the masses of people getting off the train, we found a public bus that took us to the city center. From there, we took a tuktuk (a small tricycle type vehicle) to our hotel. It took about an hour and 15 minutes to get from the train station to our hotel. Once we had checked into our hotel, we went to a nearby restaurant for some food – beef stew and chapati.
After dinner, we took a tuktuk about an hour away to visit a family that has two children with albinism. The mother’s name is Salma. She has six children – four with melanin and two with albinism. This family was unique because both of the parents were still in the picture. (However, only the mother, Salma, was at home when we visited). The family was living in a more rural part of the coast when Riziki, the older daughter with albinism, was born. Her grandmother wanted to sell Riziki to Tanzania, but her father refused and relocated the family to where they are now. The daughters with albinism are Riziki, grade 5 and Aminia, grade 2.
Wednesday, September 20th, 2077 (clinic visits with Dr. Joash, Diani Beach)
Our first stop of the day was Coast General Hospital. There, we met two doctors who work heavily with people with albinism in the coastal region of Kenya. We first met Dr. Victor, an optometrist, in the eye clinic of the hospital. Dr. Victor gave me an in-depth explanation of how albinism can affect the eyes of the people with the condition. There was a lot of medical terminology that I wrote down, but I am in no way capable of explaining all of the medical details. As Alex likes to say, “It’s okay, you’re not a doctor.” In a nutshell, the majority of eyesight issues for persons with albinism have to do with the retina and light sensitivity. Most people with albinism are extremely short sighted and have trouble focusing because of shaky eye. After our conversation, he showed us around the eye clinic, which had just received a large donation of equipment from the National Council for Persons with Disabilities.
Once we finished at the eye clinic, we headed to the dermatology department to meet with Dr. Joash Matonda. Dr. Joash is a dermatologist who developed a passion for helping people with albinism many years ago. He met a young girl named Diana (12 years old) with a very advanced and severe case of skin cancer on her face – it was so bad that it was rotting away her skin to the point where you could see her jaw and teeth and tongue. When Dr. Joash saw this young girl suffering, he realized something needed to change in the realm of skincare for people with albinism. He started an outreach program, outside of his daily duties at the hospital, in hopes of bettering the access to skincare for people with albinism. In his opinion, “we need to go into the field, we can’t wait for people’s cases to get irreversibly severe.” Dr. Joash goes to rural clinics and does home visits to provide the preventative and interventional care that people with albinism need to live healthy lives. He distributes sunscreen, hats, sunglasses, and long sleeve shirts; often provided through donations from the National Council for Persons with Disabilities. The NCPD also recently donated a cryotherapy tank and gun for Dr. Joash to use in the hospital and in his field work. Cryotherapy uses liquid nitrogen to target, freeze, and kill precancerous cells or lesions on the skin. Dr. Joash also incorporates educational outreach programs to educate both the general public and people with albinism on the condition.
After hearing Dr. Joash’s story and about his work, the three of us headed out to visit a clinic and make a home visit. We drove about an hour and a half from the city center of Mombasa to a very rural clinic in the jungle. There we met two sisters who were both developing cancerous growths on their skin and eyes. Dr. Joash examined the spots and asked some questions. The whole time he was reiterating to me that if these women had access to sunscreen and sunglasses, these growths would never have formed.
Next, we drove another 30 minutes to meet the Mweru family; they have 5 members with albinism. We just spent a brief amount of time with the family, hearing their story.
After we had finished visiting all the patients for the day, we headed on a more lighthearted adventure to Diani Beach. We walked in the sand and dipped our toes into the crystal blue water of the Indian Ocean. It was a nice way to unwind after a really tough day.
Thursday, September 21st, 2017 (Fort Jesus, Likoni School for the Blind)
Alex and I started our day by going to Fort Jesus, one of the better known tourist sites in Mombasa. Fort Jesus is a Portuguese fort built in the late 1500’s to protect the port. We didn’t actually go inside because it was pretty expensive, but we walked around the outside and on the beach in front of it.
Later in the afternoon, we took a tuktuk to the Likoni (boarding) School for the Blind. Like Thika School, Likoni specializes in the education of visually impaired students. The school has been around for over 60 years and is heavily funded by the Salvation Army. It was started by 6 graduates of Thika School, not as a school, but as a place of refuge for persons with albinism that had been threatened. Over the years it has evolved to be a state of the art preschool through high school. It is a leading example of what schools for the visually impaired should and need to look like. The school has an ongoing relationship with Coast General Hospital to provide eye care and skincare for the students. Because of the issues with eyesight associated with living with albinism, there were a good number of students with albinism.
When we arrived at the school, all the students with albinism had gathered in their meeting hall. Alex and I gave a brief introduction of ourselves, then Alex gave a really informative and engaging talk about why it is so important for those students to protect their skin and their eyes. The kids were so engaged with him and with the conversation. These kids were by far my favorite so far (am I allowed to say that here?) They were so energetic and sincere and curious. They even asked the question – what’s the difference between Alex and I – which we surprisingly hadn’t been asked before.
After our talk/discussion, we had a little photo shoot with all the kids. They were all so confident and empowered in front of the camera. Half of the girls said they wanted to be models when they grow up.
Alex and I will be returning to Mombasa the first week of October for an intense two days of visiting clinics and homes throughout the coastal regions with Dr. Joash. We will be bringing sunscreen and hats to distribute and Dr. Joash will be bringing the cryo gun, to hopefully kill precancerous spots on patients.