Alaa Jaffar
Neigh of horses, smell of grasses, children playing and I felt the grabbing and squeezing my ankle. It pained, bled and there was a lot of blood.
“Matthew we have to rush to the hospital again!”
“Not again, not again mum!”
“I shuddered to think to go to the emergency room, I hated these IV infusions. I wanted to play with my siblings, to ride horses. I just feel so different. I wished to not have this stupid hemophilia.”
Matthew Harrington is suffering from hemophilia A. It is a rare bleeding disorder in which blood does not clot properly. It is caused by mutation in the F8 gene, responsible for making the factor VIII (8) which is a protein that helps in the formation of blood clots.
“My gaze swiveled across the emergency room and observed strongly the eyes of mum, filled with fears and emotions. I distracted myself by watching the TV in the corner, but those eyes, won’t stop crying.
After I cried, I looked up and closed my eyes and wondered; What is the pain telling me? I have never accepted it and I always tried to avoid it.”
As a hemophilia patient you can experience emotional distress. Many researches demonstrate that a hemophilia patient is at increased risk of depression, anxiety, anxiety/depression and ADHD [3].
Matthew is experiencing emotional acceptance. It is not resigning yourself to always feeling terrible or holding on to painful emotions but rather being aware of your emotions and accepting them for what they are without judging them, knowing that they won’t last.
“One early morning, I woke up with my ankles throbbing and I couldn’t walk. I tried to crawl to the bathroom. I soaked my ankles and told myself: I got through so much hard times, I can get through this and I can go to work.”
“I peeked through the window and contemplated the white, great clouds. It was the day that I experienced the gene therapy clinical trial. I thought: ((What do I have to lose? I’ll give it a shot!))”
Gene therapy is a promising technique in treating or preventing complex genetic conditions. In this case: A corrected version of the F8 gene is injected directly into a hemophilia patient’s body and only one dose is needed.
“I felt normal; there was no throbbing, no bruising. There was nothing. I could actually walk every morning and make coffee. It was unreal.”
Dr.Stacy Croteau, who supervised the gene therapy of Matthew, had this to say about administering the treatment: “It’s just such a success whenever you have the good fortune to be able to share a treatment with someone that really makes their life better and not only better, but easier. It’s a huge win.”
A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.
- Christopher Reeve
Note: Exercises to help you learn more about how to accept your emotions: www.verywellmind.com/emotional-acceptance-exercise-observing-your-emotions-425373
References:
3. Al-Huniti, A, Reyes Hernandez, M, Ten Eyck, P, Staber, JM. Mental health disorders in haemophilia: Systematic literature review and meta-analysis. Haemophilia.2020; 26: 431-442
5. Ohmori T.(2020). Advances in gene therapy for hemophilia: basis, current status and future perspectives. International journal of hematology, 111(1), 31-41.
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