Hope

Medical journey may offer hope

Translated from Dutch

This morning I received this message (below) about a sickle cell therapy, from the New York Times with a 'breaking news alert' in my mailbox. I have seen - literally - the pain of friends suffering from sickle cell anemia. The red blood cells, which must transport oxygen through the body, are not round as they should be, but half open like a sickle. This leads to anemia, lack of oxygen in the organs and attacks of pain. The disease is common among people from West Africa. A fortunate thing is that it often makes them completely or partially immune to malaria, because the malaria parasite also cannot get a grip on the sickle-shaped blood cells. But because many sickle cell sufferers survived malaria, this trait has been genetically strengthened in people of West African descent.

In my circle of friends I know quite a few people who actively or passively suffer from this disease. In 2006 I issued a declaration of guarantee for a visit to the Netherlands by a 13-year-old girl and her grandmother. Grandma had taken the girl with her on the run from the rebels and great was the joy when it turned out - discovered by chance - that they were still alive. I could contribute to their family reunion. I remember her attacks of pain and fainting. I was on my way to her when she texted me to come to the Amsterdam Medical Centre AMC, where she had just been taken by ambulance. After a blood transfusion her condition improved and I was able to take her with me. She has now emigrated to America and has a family there. Her two sons are also sickle cell carriers and one of them was treated last year with a transplant of bone marrow from the other. This morning I sent her the link to the New York Times post.

She responded immediately. Her son was treated in the same hospital and by the doctor mentioned in the article. “He and his team are the best of the best,” she texts. Her son is now sickle cell-free, still a carrier of the gene but no longer susceptible to the disease. "I am very happy for this breakthrough and I pray more people will get the opportunity to experience recovery and live a normal life", she wrote. 

Modern science often frightens me. What is possible and where does it all lead? But I also feel great gratitude for the possibilities that this time offers. The inequality of opportunity hurts me. At the same time as the messages from America, I received messages from West Africa from a friend who is completely devastated and starving. "I am glad it worked out for your child and that you had this opportunity", I texted to America, "I'm also happy I could walk along a few steps in your life". But I ignored the texts from West Africa. For the time being.  I felt like Bathasar Gerards (the murderer of the founding father of the Netherlands, Willem van Oranje in 1584, who received a cruel punishment) being pulled apart by four horses. First the good news has to sink in before I can let the bad news get through again.

New York Times May 6 2024
First Patient Begins Newly Approved Sickle Cell Gene Therapy
On Wednesday, Kendric Cromer, a 12-year-old boy from a suburb of Washington, became the first person in the world with sickle cell disease to begin a commercially approved gene therapy that may cure the condition. For the estimated 20,000 people with sickle cell in the United States who qualify for the treatment, the start of Kendric's monthslong medical journey may offer hope.

Read more.