The following story, told by Tina Chimavu, is slightly edited for format and style.
My name is Tina Chimavu, and I am from Lusaka, Zambia.
I was born and raise in Lusaka, am 28 years old, and here to share my story about my Type 1 Gaucher disease.
In July 0f 2018, I started to feel sick and, after visiting the hospital, was told that I had anemia. I had never presented any symptoms of anemia before, but I was given some medication to help, so I began taking them.
Months later, in February of 2019, I had a terrible stomach pain one night, so the next morning I went to the hospital where they did an ultrasound. The results showed that I had an enlarged spleen measuring at 15 cm, so I was given additional medication and told to come back in two weeks. When I returned, another ultrasound showed that my spleen had increased to 18 cm!
I was in university at the time studying Nursing, but had to stop because of the sickness.
Introduction to Dr. Mwandama
Fast forward to March 2024, and I fell ill and was taken to the hospital agin.
They did a full blood count and scan, finding that my blood levels had dropped to 3 grams and my spleen was now measuring at 21cm.
That’s when I met Dr. Charles Mwandama, Consultant Physician and Clinical Haemato-Oncologist at the University Teaching Hospital in Lusaka. He wanted me to do a CT scan, which came back fine. We did tests on my iron that showed I have Iron-deficiency anemia. Then he requested a Bone marrow biopsy, and when the results came out, he suspected it may be Gaucher disease.
In Zambia, we don’t have the machines to test for Gaucher disease, so the decision was made to have my spleen removed. He talked with the surgeons and set a date for my spleenectomy.
A week before the operation, I received a phone call telling me that the operation was cancelled and I should meet Dr. Mwandama for further discussion.
Connecting with the National Gaucher Foundation
Dr. Mwandama told me he was connected to Dr. Robin Ely, co-founder of the National Gaucher Foundation, and that the Foundation was willing to help me do the tests for free.
Dr. Ely and Dr. Mwandama worked hand-in-hand to make sure I received the test kits, and when we received the kits, I did a dried blood spot card. I sent the samples back, and months later, I received the positive results, showing that I have Gaucher Disease Type 1.
But Dr. Mwandama and Dr. Ely didn’t stop there – they pushed further so that I could start getting treatment for my Gaucher disease for free from the pharmaceutical company. Though it took one full year, at long last I started my enzyme replacement therapy. So far, I have received 7 treatments, which have made improvements on the anemia and bone pains.
This has given me and my family so much hope and joy.
I’m so excited that I will be able to get my life back and hopefully go back to university and study again.
