World (International) Sickle Cell Day- My Reality – June 19th
My red blood cells are shaped like croissants and yours are round.
Your Hb (blood count) might be 18 and mine could be between 7-10. 10 if I am healthy, recently transfused or just having a lucky day.
My red cells get sticky in my blood vessels and restricts oxygen from circulating around the body, causing what is known as a 'painful crisis'.
My crisis is excruciating and debilitating that I always describe it as having a number of people with hammers assaulting every part of my body at the same time, predominantly my chest. I am like a vegetable when I am in crisis.
I may often have paramedics in my flat at 2am treating me.
People often look at me and say you don't look sick and I smile. One minute I am crushed and helpless and the next I am all fine and dandy.
Triggered by a number of factors, often unpredictable with the predominant feature being pain.
My parents sometimes feel guilt and are upset when I am in crisis so I stopped telling them. It's hard for parents, you know?
Science predicts a life span of 45 years for a sickle woman meaning that women who live(d) over 45 will start to feel like they are on borrowed time.
Our organs are damaged each time we sickle.
If we sickle in our eyes, we could have sudden loss of sight. Yep! We sickle everywhere because cells are in every part of the body. If we sickle in our brain, it could be dire.
Sickle boys/men can sickle in their penises and that's called priapism. It's often humiliating and could be life threatening if they are not treated urgently.
Your red blood cells will break down and regenerate new cells every 120 days. Mine happens every 12-20 days so one can imagine the mad levels of overdrive at which my body and organs constantly operate? It means I will be anaemic every 12-20 days for the rest of my life. As a result of this, sickle livers will not work as effectively as yours. Meaning that we are likely to have it working ten times more than its actual capacity and so our livers would store more bilirubin, a yellowish substance, somewhat like waste, that causes jaundice. This is why you may notice lots of people with sickle often have yellow eyes. Sometimes my eyes are bright yellow.
I have medicated each day since I was born so I don't know what it feels like not to be constantly popping pills. I may never know.
I operate on 1/3rd of a healthy woman's energy but somehow I do ten times more than most healthy women.
I have a dysfunctional and an almost unhealthy sense of this need to constantly work, learn and play. Rest is hardly in the equation.
I am constantly fatigued and will never know what it feels like never to be tired.
I have survived tens of pneumonias in the space of 3 decades. Hmmm! Wonder how thats happened? I now get a 4 yearly pneumococcal vaccine.
I cannot love any man until I know they are sickle trait free. If I have a child with a man who has the trait, I am 99% very likely to have a sickle kid. Imagine having to ask questions before allowing your heart to fall for someone?
In 12,000 days I have existed on earth, I have probably spent about half that time on a hospital bed!
I get needles pierced into my veins each month to draw blood. It's happened for years that suddenly my veins are non- existent that it's become a constant struggle to draw blood. They now use an ultrasound machine to find my veins.
People who have sickle cell have most likely suffered a stroke or had other serious complications like organ failure.
Kids with sickle are likely to eat weird things such as chalk, sand or cotton because they have a food disorder condition called PICa. PICa is when our sickle bodies lack a mineral) for example zinc) and the body somehow seeks and craves natural forms of zinc that are non-edible.
Most children with sickle cell will have their spleen removed to help them deal with infections.
Children cannot understand what exactly is happening to them when they sickle.
If I run, I would sickle.
If I run for the bus, I would sickle and sometimes I don't even catch the damn bus. So I stopped.
I have never been to a gym, I don't work out.
I never participated in sports in school.
I do yoga and a special adapted 7 mins workout each day.
I walk at least 30 mins a day.
I hike in Epping forest at least 3 times a year.
My heart is too fragile (literally and figuratively) to have any form of cardio-inclined exertion.
I can never be exposed to any extreme weather cold or hot and not fall ill.
If I don't drink at least a liter of water a day, there will be problems.
If you sneeze on me on the tube and I catch your virus or bug, it will trigger a crisis.
I do not use lots of public toilets to avoid catching an infection.
My overall hygiene has to be excellent otherwise I could run into problems.
I need extensive planning to jump on a plane and travel long haul in order to avoid a crisis.
We live like bloody robots sometimes.
Always aware, never oblivious, always alert, always avoiding, and essentially, just doing everything the doctors prescribe.
People sickle cell are likely to be depressed, clinically.
I get major mood swings when I am unwell. I feel depressed when I am in long periods of pain and tired. I hate those narcotics they give me when I am in excruciating pain. I feel out of my body and they mess with my kidneys. But I know I need it to help my pain.
We are likely to be creative individuals. We spend a lot of our time on a bed.
Generally, most people with sickle cell will have lots of limitations, maintaining their studies, holding down any form of a career or staying employed, and potentially losing their place socially in society because the condition is likely to affect their social interactions due to the unpredictability of the condition. When I cancel on friends last minute, it's not nice. But they hardly get it. I cannot be physically in pain, be out socially, just to please my friends. A crisis can happen anytime and anywhere and is often unexpected.
I don't know how I have done anything and everything at the rate I go. I have been lucky. I am on a drug that treats blood cancers. It's basically a lower level of chemotherapy. I lose my hair, my nails darken and I get constant migraines, I have little or no white blood cells. But I get by, it's keeping me well by giving me more of the cells found in new babies (HbF) and reducing my 'sickle' cells and I love life so I am a happy girl most of the time. Sick, but happy. Sickle cell may have made me mad!
So doctors may speak very clinical language that make it difficult for people to understand what it feels like to live with sickle cell on a day to day basis but I have laid out the facts in simple language for you. I want you to be aware of sickle cell. It is damn too serious a condition, almost comparable to cancer, only that cancer takes lives quicker. There are two terrible conditions that affect the human cells. There is still no cure for sickle cell because it's a genetic disorder. You really cannot correct your DNA. I hope they find one in my lifetime.
Hats off to all the warriors out there.
Happy World Sickle Cell Day!!!