Patients Testimonial
Teenager wants to save lives like hers
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Patricia Sepogoana (15),
“I cannot lose hope. God witnesses everything and He knows about me.” |
By Nicolette Duda
Patricia Sepogoane (15) is your average teenager – she loves to spend time with friends, read books, listen to music and play on her laptop. Her dream is to become a doctor to follow in the footsteps of those who have saved her life on numerous occasions.
Patricia has a type of cancer called Fanconis Anaemia, which she inherited from both parents – mom Rachil and dad Manuel. Fanconis Anaemia mainly affects the bone marrow and decreases the production of all types of blood cells – red, white and those in platelets. Patients have to be monitored carefully to check their blood count.
Although life is as normal as it can be for Patricia, she has been exposed to much more than other teenagers to fight for survival. Getting a blood transfusion every second week at Chris Hani-Baragwanath Hospital in Soweton feels like second nature. She makes this trip on her own by now. “I travel to Chris Hani-Baragwanath every second week to get two units of red blood cells. The transfusions take longer than eight hours, so I stay the night in hospital – my second home,” she says.
Life before these transfusions is not easy and Patricia feels exhausted, dizzy, nauseous and listless. “I have severe headaches and just want to sleep. Then I know I don’t have enough blood and it’s time for a blood transfusion to improve my condition.” After the transfusions, Patricia’s life can go on and she does not need to put up with spells of dizziness and lethargy.
The thought of receiving unsafe blood regularly crosses her mind, but Patricia’s faith puts her at ease. “I just pray to God that the blood I receive be safe,” she says. “I’d love to be a doctor one day to help save other people’s lives. It’s my dream. I also dream of having a family and children and lead a stable life.”
Patricia is a Grade 10 learner at Wonderfontein High School in Carletonville. She says only a handful of her close friends are aware that she receives blood transfusions so regularly. “They do ask what Fanconis Anaemia is and I tell them what I know, but it’s not always easy. I cannot take part in sport like my friends because I suffer from asthma,” she says. Her parents are a major support in life as they suffer from the same disease themselves. She also has two sisters, who are twins.
For Patricia, life would not go on without blood donors. “I wish someday I could meet all the people who saved my life every second week. I will need to get blood for the rest of my life and cannot, therefore, thank all blood donors enough. Every drop of blood saves my life,” she says. She has accepted her condition and embraces every day with new motivation.” I cannot lose hope. God witnesses everything and He knows bout me.”
Causes of Fanconis Anaemia
To inherit Fanconis Anaemia, a person must get one copy of the abnormal gene from each parent. The condition occurs in all racial and ethnic groups. It is usually diagnosed when a person is between 2 and 15 years old. The disease is caused by a genetic defect. This defect prevents cells from fixing damaged DNA or removing toxic substances called oxygen-free radicals that damage cells. People with certain birth defects or who develop low blood counts may have this disease.
Symptoms
Most people with Fanconis Anaemia have these types of symptoms:
- Skin pigment change (darkened areas of the skin, cafe-au-lait spots, vitiligo)
- Short height
- Upper limb problems (missing, extra or misshapen thumbs; small or missing radius bone in the forearm; problems of the hands and the forearm bone in the lower arm)
- Abnormal bones (abnormalities of the hip, spine or rib; curved spine (scoliosis); small head)
- Abnormal eye/eyelid
- Malformed kidney
- Abnormal ears/deafness
- Abnormal hip, leg, and toe
- Abnormal digestive tract/heart and Lungs
Prevention
Fanconis Anaemia is an inherited disorder and little can be done to prevent the disease. Families with this condition can have genetic counseling to better understand their risk. Vaccination can prevent some complications, such as pneumococcal pneumonia, hepatitis and varicella infections.
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