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My immune system was fighting my healthy organs: A tale of a woman's battle with Haemophilia

Health
 Photo: Courtesy

 

Kate Muthoni may not lead a completely normal life but she is certainly grateful that she can now walk and that her bout with Ascites is over. She shares her poignant story with VIP OGOLA.

I am a 35-year-old mother of two sons aged 11 and 15. In 2007, I was diagnosed with Graves Disease, an auto-Immune disease. My immune system was fighting my healthy organs and cells, particularly my liver. This led to the removal of my thyroids in December 2008.

 I then developed Ascites, which is the abnormal accumulation of fluids in the abdominal cavity. Ascites is often a result of liver disease. My stomach ballooned overnight. Thinking this was all I had to deal with, I continued working as a medic.

 Soon though, I began bleeding a lot and my skin would darken when touched. I got very weak and became completely bedridden. No one at Kenyatta National Hospital could diagnose what was ailing me. Unfortunately I also lost my job and became a single mother when my husband deserted us.

Desperate to sort out my health issues, my friend Eric Karugo and I launched an appeal on Facebook through a page titled 'AmshaKate.'

ACK St. Stephen's Church in Waithaka responded to my pleas. I needed Sh5 Million to go for treatment in India. The church raised this and covered all my expenses, including taking care of my children while I was away. They sent me to Apollo Hospital in New Delhi. This was in December 2015.

 It was here that I was diagnosed with Hemophilia A and B. I had acquired it as a consequence of the autoimmune disease. Diagnosis had been difficult since it is a condition associated mostly with men. I am, to the best of my knowledge, the only woman in Kenya who has it.

I came back home to try raise funds towards a liver transplant. In the meantime, to survive, I had two options. One was to have a monthly factors injection. This is where with every menstruation, I would receive the treatment.

Each treatment cost Sh1.2 Million. The second option which I chose, was to get a monthly implant of plasma cells. Plasma is really cold, and in the six months I underwent this treatment, I got very high fevers. Eventually, I had to stop. I now urgently needed to raise the Sh6 Million towards the liver transplant.

One fine night in August 2016, I went to bed and when I woke up, my stomach had radically reduced in size and I felt strength return to my feet. My church friends had come visiting and when I indicated a desire to walk out of the house, they thought I was crazy. But I got up and walked out to bask in the sun. Just like that! After eight years, I could walk again. The Ascites was gone and I no longer needed a liver transplant. My waist circumference is now about 38 inches.

In the 8 years I was bedridden, people shunned me believing that I had been bewitched. No one wanted to risk catching what I had. Only my new church family stood by me. When I got up and walked, society stubbornly refused to take me back. I was still 'different' in their eyes.

I still have Hemophilia. My periods are heavy, and the flow has a thin consistency. I have tried in vain to find sanitary towels that could minimize the monthly disruption to my life but only adult diapers handle my flow well. Every month, during my period, I have to go to hospital for blood work to access the amount of time it takes for my blood to clot.

 For a normal person it takes about 10 seconds, for me, it takes 120. I have to be very careful when handling knives, or even with what I wear because I cannot afford to bleed. The doctors advised me to look out for symptoms of fatigue. I live in Dagoretti in a mabati house and the extreme temperatures in the house increase my discomfort.

Nevertheless I am grateful to God. My children have remained in school and are doing well, especially my eldest. The church has remained faithful in taking care of my family. I have learned through my life changing experience, that God cares for us, and that family is not biological, but God ordained.

 

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