APPEALS: SICKLE CELL PATIENT’S CHALLENGING JOURNEY

 

Chanel said:

“I was diagnosed with Sickle Cell disease at nine months old.  I was rushed to hospital due to a very high temperature like a boiling kettle, which prompted my grandmother and mother to rush me to Queen Mary’s Hospital. Doctors were unsure what the problem was and had to run numerous tests but still couldn’t work out why I was so poorly. The doctors had no option but to arrange an emergency blood transfusion.  After the blood transfusion I was still poorly but was slightly better than when I’d first come in.”

“Doctors were surprised, as they thought I wasn’t going to make it and had told my grandmother so, it was then the Doctor told my grandmother that I had Sickle Cell Disease, a unique disease that doctors were unaware of and not sure about its characteristics. As this was the 1980’s there was not much information on what sickle cell was and its impact and how it could be treated, knowing this information had not had enough research behind the disease and its diagnosis made it hard for my family to receive.”

“After my diagnosis I was a regular patient at Queen Mary’s as part of their case studies and this was the situation for the most part of my primary school life. My sickle cell became very rapid and a repeat offender in many ways that kept me in and out of hospital, I suffered a severe case of splenic sequestration, bacterial infections, dactylitis and many more symptoms that had an impact on my childhood, and slowed me down in physical activities. My health slumped and deteriorated which then went on to affect my self-esteem in my older years.  As an adult living with sickle cell I face daily challenges caring for myself while being a single parent, I’ve faced 3 near death experiences with my sickle cell suffering minor strokes to my lungs (pulmonary hypertension).”

“Sickle Cell nearly robbed me of my moment while giving birth in 2010. I was due to have a C section in the lead up to me giving birth, but as my daughter arrived early I never made it that far and had to give birth with Gas & Air, the contractions I was having triggered a crisis, making it a very painful and frustrating experience while giving birth. After I had given birth to my daughter I heard her cry for the first time and wanted to hold her instantly, but sickle cell had me gasping for breath, my blood pressure was high and I had gone into a sickle cell crisis. This was such an ordeal for me at the time, nurses had to administer morphine and anticoagulant to ease my pain before I was handed my daughter.”

“I remember this moment like it was yesterday as the moment still brings tears of sadness and joy at the same time. I remember doctors and consultants explaining I may face complications with giving birth and to avoid pregnancy, as my sickle cell was so severe and was uncontrollable. Throughout my sickle cell life and experiences I’ve had no other option but to keep fighting and being my best support system to myself and my daughter. There wasn’t a community of sickle cell support I could reach out to in my area, there was no mentors or support other than to rely on my appointments to see the healthcare professionals.”

“Over time and most recently I’ve managed to maintain good connections with my healthcare professionals at St George’s Hospital and I have been seeing a clinical psychologist as part of the sickle cell pain management, this service has helped me to understand my pain management. This course is offered to patients who attend St Georges Hospitals but I do feel like this service will benefit a lot more people if reached out to other areas. I started ‘Unsickle My Cells’ as I was frustrated with the lack of support from sickle cell organisations, and wanted to connect with other SC patients to share and hear other warriors experiences and difficulties that other SC face. My cousin lost her life to SC 3 years ago and this left me depressed suffering from anxiety and PTSD. Feeling the way I did I always wondered how many other people in my position that are sufferers are also suffering from mental health issues with no support?  I struggle and cry every day as my extreme chronic fatigue has the biggest impact on my daily basic needs and life, but while I go through this, it’s also my duty as a living warrior to help bridge the gap and connect with other Warriors and Black, Asian, Mixed Race, Minority Ethnic communities across the globe.”

Please CLICK HERE if you would like to donate blood to assist Sickle Cell patients like Chanel.