Determined to Find Help
Patient: Siima Katabazi
Diagnosis: Stevens Johnson syndrome
Sight Restored: February 2013
“Yes, we can help.” Siima Katabazi was waiting for those four words, which appeared in an email from Boston Foundation for Sight (BFS) that she received in September 2012. After suffering from Stevens-Johnson syndrome (SJS) for more than a year, she was determined to find treatment for the painful condition, which was robbing her of vision.
As is often true with SJS, her immune system had reacted strongly to medication—in her case, for malaria, which is endemic in Uganda. “In February 2011, I went to see an ophthalmologist, and he prescribed eye drops that made my eyes worse,” she recalls. “I had almost reached the point of surrendering when I started going to the Internet. I searched until I came up with Boston Foundation for Sight and saw that they had helped other people with SJS.”
Ms. Katabazi, who is 38, lives in Kampala with her husband and two daughters and works as a certified public accountant, began making plans to come to BFS. After ensuring that she had the funds for travel, lodging and treatment, she arranged for the long trip, which she made alone—legally blind and wearing a patch on her left eye. She found her way to the Sheraton Hotel in Needham and, the next morning, was seen by Anna Cressey, OD.
“Dr. Cressey examined my eyes and told me that they were not as bad as they could have been,” Ms. Katabazi recalls. “She said to me: ‘I believe you will be okay.’ I was so happy to hear that from a professional person.”
The next step was to insert trial PROSE devices. “It was a struggle to get the devices in place because Siima’s left eye was almost closed, and she was in a lot of pain,” says Dr. Cressey. “Once they were in, her eyes opened up.”
For Ms. Katabazi, that first session made all her efforts to come to BFS worthwhile. “I could see things around the room and, in ten minutes, I had no more pain,” she says. “My soul was so happy.”
She was soon wearing PROSE devices with her own prescription. “My vision kept improving so that I didn’t need to wear glasses,” she says. “I called my family, and my children were so happy. They couldn’t wait to see me.” She is grateful to her father, who funded the cost of her treatment and travel, and her entire family for their support from the beginning.
The initial offer of help from BFS went well beyond the specialized treatment that returned Ms. Katabazi to her productive life, including her full-time accounting position. BFS staff provided paperwork that paved the way for her to obtain a travel visa. “They wrote to the consulate in Kampala,” she notes. “When I got there, the visa was waiting for me.”
After she arrived in Boston, a blizzard hit. “It was the first time I saw snow in my life,” says Ms. Katabazi, who was wearing open-toed shoes before BFS staff bought her a pair of boots. Before she flew home, Sheila Kelly, BFS clinical case manager, drove her to area pharmacies
to stock up on the correct lens solutions, which are not easily accessible in Uganda. Because at home she cooks outdoors over an open fire, BFS staff helped her buy protective glasses that fully cover her eyes.
“The beauty of BFS is that we can really give patients back a big part of their lives,” says Dr. Cressey. “That’s why we’re here. It’s all about the patient.”
Ms. Katabazi experienced just that. “At BFS, they helped me, they coached me, and I am so grateful to them. It was the best care that one would love to receive.”