The Invisible Disease.“People with rare diseases are a small group so they fall through the cracks and are unnoticed” — Trudy Nyakambangwe (Director of Child And Youth Care) —
Tsepiso is 25-year-old women living with an invisible disease called Von Willebrand Disease (VWD). Von Willebrand Disease is a common inherited bleeding disease that affects both men and women equally. VWD is caused by a defect of deficiency in the Von Willebrand Factor (VWF) which is a large protein made up of multiple subunits. VWF binds to clotting factor VIII in the circulation and protects it from breaking, which leads to the formation of a stable blood clot which stops bleeding. Lack of sufficient VWF may result in difficulties forming blood clots.
Research shows that VWD has there are 3 main types of VWD and the degrees of severity and inheritance patterns varies which each type. However, in Tsepiso’s case she tried to find out the type of VWD she has but since she had changed hospitals at the time the doctors were not able to access her records and therefore testing become difficult.
Currently Tsepiso is a proud mother a beautiful baby boy named Mamdlenkosi meaning God’s divine power and indeed, Tsepiso believes her son is a gift send to her in the name of God’s divine power to aid her in her struggles.
She gave birth on the 4th of September although she has mentioned that her journey thus far has been tiresome and draining.
During Tsepiso’s pregnancy the doctor requested for a VWF test, human factor 8 test and an FBC to monitor and determine the different supplements she will need when she goes into labor in order to control the bleeding. The doctors managed to control the bleeding and there were no complications however, testing was impossible due to funding. The doctor said the baby was in good condition before labor however, there were a few concerns that had to be addressed beforehand.
Since Tsepiso lives with VWD and the disease is hereditary there was a concern that her baby boy would inherit her condition too. As of today, there is still need for the baby to be tested for VWD.
As Child Youth Care we paid the doctor a consultation fee for Tsepiso as she could no longer afford to pay for hospital visits before giving birth. She started her consultation at United Bulawayo Hospital but due to unemployment and lack of funds she was referred to another doctor at Mpilo general hospital where she received the appropriate support.
We conducted a telephonic needs assessment with Tsepiso who highlighted that she is unemployed and with her humbling and strong-willed nature has asked us to assist her in finding a job. She also spoke of her independence as empowering and would like to support her new baby boy. She noted that ever since the lockdown started, she has been doing general work at her neighbors’ houses as a way to make money to take care of herself.
Tsepiso also highlighted that she is trying to buy at least one month’s groceries that will be enough for her and the baby since she will not be able to do any work during that time. She also indicated that the only form of PPE she has are homemade masks.
Having been in contact with Tsepiso, we decided to run a fund-raising campaign to raise donations based on her needs such groceries, baby clothes and money for tests for both herself and her baby. We managed to receive groceries such as mealie meal, salt, sugar beans, flour, dried kapenta and sugar as well as baby clothes. In terms of funding for a test which we feel is very important for Tsepiso, we could not raise enough for the testing to take place.
September 2020 Edition
Von Willebrand Disease. Below is a story about a young woman’s journey living with an invisible disease.
February 2021 Edition
Congenital Adrenal Hyperplasia (CAH Disease). Below is the story of a young girl who is living with ambiguous genitalia which is affecting her normal growth and development.
March 2021 Edition