• For patients with sickle cell disease, access to blood donors is a matter of life and death
• Corona lockdown dealt a cruel blow to them, and costs of medication are also soaring
Shem Kavuku, 40, a sickle cell patient in VOK Mombasa, has so far undergone three blood transfusions since Covid-19 came to Kenya.
Sickle cell disease is an inherited blood disorder that makes red blood cells change shape, disrupting oxygen supply to the body.
Kavuku cannot even remember the number of transfusions he has had overall since he was born. They are so many.
He knows he will still need more as this is an essential agent to the life of a sickle cell patient. It needs to be readily available as sickle cell patients need frequent blood transfusion.
Kavuku also knows with blood and medication, sickle cell anaemia is manageable.
However, the biggest challenge is the dryness of blood banks in hospitals.
He has been depending on family for blood transfusions, and this at times is risky.
This was evident during this time when Covid-19 has taken centre stage and he was separated from his family due to the lockdown on Mombasa, Kilifi and Kwale counties.
“It was challenging for them to get permits to cross over, and it was also challenging for me to go there,” he said.
They, however, managed to cross over, but with a lot of difficulties, and he got the blood.
DISCRIMINATED AGAINST
Getting medication at this time to reduce attacks, Kavuku said, has been expensive and the attacks have somehow doubled.
“The most effective drug we use has become scarce and it usually helps to avoid attacks,” Kavuku said.
Medication he is supposed to take daily has increased in price. Some he used to get at Sh50 has increased to Sh75, while others he used to buy at Sh1 is now Sh10.
Kavuku urges the government to support sickle cell patients, saying it is a disease that requires a lot of attention but at the moment has been neglected.
“What is the government doing for people with sickle cell? Because most of the time, you will hear about people with Covid, diabetes, high blood pressure. Sickle cell has a lot of complications, but there is no voice,” he said.
He was born normal but sickle-cell has rendered him disabled as he now depends on crutches to walk.
It has also been difficult to cope with life financially as he is on unpaid leave. He works as an ICT official in one of the universities in Mombasa.
Upon asking about his pay, his boss laid him off, telling him they are only doing him a favour by paying him since he is sometimes off work because of the attacks he gets.
“Even if people go back to work, I do not think they will take me back because for them, they think they are doing me a favour,” he said.
He has received a lot of stigma at his workplace, which he has even gotten used to.
Kavuku was diagnosed with sickle cell anaemia when he was just six months old, and his journey to 40 has been long and hard. But he is thankful that he gets to see another day.
CHILDHOOD CONTRACTION
Nuru Abdhulrahman, mother of Mohamed Suleiman, two, went up and down when her child became seriously ill at six months.
Living in Likoni, Mombasa, she took him to different hospitals with the support of her husband, not knowing what he was suffering from.
The symptoms he had were swelling and pain on his body, and they discovered his blood had reduced.
She was advised to have a blood transfusion on him but she refused since she did not know what her child was suffering from.
“Later after some time when we were trying to get medication, that’s when he was diagnosed with sickle cell anaemia, and by then, his blood was at 4 units,” she said.
Nuru was advised not to allow her child to undergo a blood transfusion, unless the blood has gone below 4 units.
“We were advised not to panic too much when his blood level is low, and what is important is to have a follow-up on his medication so it does not go too low,” she said.
At this point, he is fine, but at times he gets attacks and becomes very weak. He started to take his baby steps quite late. His parents were concerned, but they knew they had to be patient, and he eventually started walking.
So far, he has not gotten a blood transfusion, but the parents are afraid that at some point, he will need it. But they are hopeful it will never happen.
Nuru said before he was diagnosed, there was speculation from family and friends that he is being haunted by evil spirits.
“Some would tell you those are evil spirits draining your child’s blood and they were advising me to get help from a traditional doctor,” she said.
She almost gave in to such speculation, but after realising what her child is suffering from, she sought medical attention. And now she ensures she seriously follows up on his medication so he does not get an attack.
Nuru said getting medication for sickle cell patients is hard to get and sometimes they are unavailable.
“Some of the medicines are unavailable everywhere. Like in chemists around the area I stay, hydroxyurea, which is compatible with my child, is unavailable. And when I get another alternative, then he gets frequent attacks,” she said.
WHEN IT LEADS TO DEATH
Rajab Munga succumbed to sickle cell anaemia at the age of 29 back in 2011.
Ema Issa only has memories of him as she was his caregiver when he was still alive.
Of all the people Ema has known in her Life, Munga suffered at his time alive, especially when he had attacks.
She remembers Munga having crises and undergoing blood transfusions as his blood used to reach three units.
When in crisis, Munga would lose consciousness until he received a blood transfusion.
Munga always looked weak his whole life, and he always did his work at a slow pace. He could also not walk very fast or do some chores quickly.
Ema said Munga’s mother always had superstitions that her son had evil spirits, which would drain his blood instantly. But Ema knew she did not have to listen to such speculation and used to follow hospital advice.
On the day he died, he had an attack and he was rushed to the hospital. His blood had reached three units and he had to undergo a blood transfusion.
Ema was with him at the hospital together with other family members, and they were hopeful he would recover.
Munga started to feel uneasy and asked for help to visit the toilet. Ema helped to hold him with a family member on his other side.
When they put him back to his hospital bed, he did not wake up again. He breathed his last, and that was the end of him.
“He was in pain, a lot of pain, but he had to rest. Until today, I dream of him that he has come back to this world, and I usually ask him why he has come back to this world and the way he endured a lot of suffering,” Ema said, tears rolling down her face.
Until now, she sees the need for people to be educated about sickle cell and its medication. Because if, as a family, they had listened to speculations of witchcraft, then Munga would not live to see 29 years, however difficult the life.
BLOOD BANKS DRY
Blood banks in hospitals have become dry, especially at this coronavirus time.
Many in need of blood had to ask for appeals for blood, while others got lucky and families donated to them.
Regional Blood Transfusion Centre Mombasa head Hamisi Suleiman said the closing of schools has led to dryness in the blood banks.
“The blood banks are always sustained by high school students, but now the schools are closed and the colleges and we are feeling the heat,” he said during a blood donation drive.
Dependency on blood donations is mostly on family members.
Suleiman said Covid-19 has made other diseases to be forgotten, which is quite risky.
He urged volunteering for blood donations, which will come in handy for emergencies, and people don’t need to succumb for missing blood.
The stay-at-home directive has even made the demand for blood to be higher.
Sickle cell patients who are vulnerable need blood readily available, and having the blood banks dry makes life difficult for them.
Edited by T Jalio