Sickle Cell Story

The purpose of this post is to introduce and educate people and bring awareness to sickle cell disease.

World Sickle Cell day is June 19, 2017.

I will not go into full detail about my sickle cell journey here but I would like to share with you one of the therapies/procedures that allows me to maintain my quality of life. –Apheresis or “exchange transfusion” is when all my blood gets removed and then is replaced with donor blood. Every 4 weeks I receive 14 bags of donor blood, all at once, over the span of about 5 hours. It’s sort of like an oil change, but its blood and I’m not a car. It also costs $1417.23 every month.

I have always been private about my condition, but I believe sharing this can help others and bring awareness to the greatest challenge in my life and the lives of the family and friends of those that suffer from this ailment.

Before this therapy, and for the last decade I have spent an average to 10 weeks in the hospital a year. This time not including various appointments and all I must do to manage my condition at home. Sickle Cell Disease can be insidious because it is a blood disorder and your blood travels everywhere. This causes, for me and many others, issues such as vision impairment and bone related maladies such as arthritis and AVN​, even kidney failure and liver damage.
Nowhere is safe.

Sickle Cell causes tremendous pain. I experience severe chronic pain daily. Even more serious is when you an acute vaso-occlusive pain crisis. Which, for me, requires enough pain meds to kill a zoo full of creatures. Sometimes it requires sedation because the pain is so excruciating.

Even though it is a struggle, I am lucky to have the opportunity. When I was born, the life expectancy for someone like me was in the teens. We were not expected to make it past adolescence. Sadly, my sister, who also suffered from SSD, was not as lucky as I have been.

Thank you for taking the time to learn a little about me and my condition.
It remains a challenge, physically emotionally, and financially.
If you would like to support please donate, promote, and up-vote.

BTC: 1DTtXeCUJHwzbiPyUotKx3Kw8G7saPNc4E

ETH: 0x369Aa14FC8d518896D0F1c6968b142950476F04d

I have included some facts about SSD below
You can also scroll down to see some pictures from apheresis on June 15, 2017:

Simple Facts about Sickle Cell

“ Sickle cell disease is the most common hereditary hematologic disorder in the world. It primarily affects Black Africans and Americans, as well as some persons of Mediterranean, East Indian or Latin American heritage. About 8% of the African-American population carries the sickle cell trait. Sickle cell disease affects about 1 in 400 African-Americans. In the USA there are some 50,000 African-Americans and Hispanics affected with sickle cell disorders.
Sickle cell disease is a generic term for a group of genetic disorders characterized by a predominance of hemoglobin S (Hb S). These disorders include sickle cell anemia, the sickle beta thalassemia syndromes, and the hemoglobinopathies in which Hb S is associated with another hemoglobin that participates in the polymerization of hemoglobin and the sickling of the red blood cells.
All sickle cell disorders involve an inherited gene for sickle hemoglobin from one or both parents.
Sickle cell diseases include inheritance of the gene for sickle hemoglobin from one parent and one of the following:

1. A gene for sickle hemoglobin from the other parent (Hb SS),
2. A gene for another abnormal hemoglobin from the other parent (Hb SC, HbSD Punjab, HbSO Arab, HbS Leopore, or Hb SE),
3. A gene that limits hemoglobin production from the other parent (sickle beta +/0 thalassemia). In S beta (+) thalassemia there is some production of beta globin, and in S beta (0) thalassemia there is no production of beta globin.
   All of these conditions are accompanied by health problems.
   Complications of sickle cell disorders result from the inability of the rigid cells to pass uneventfully through the microvasculature. The changes occurring in the red blood cells lead to hypoxia of the tissues and potential or actual tissue damage. Most commonly, this is manifested clinically as the onset of the acute sickle cell painful vaso-occlusive episode.
   Macrovascular occlusion may also occur, such as cerebral arterial thrombosis (stroke), usually in children with Hb SS disease. Ischemic stroke can affect adults and children. Other complications of sickle cell disease include splenic infarction, splenic sequestration, and increased risk of infection.
   Adults have progressive end-organ damage, particularly of the lungs and kidneys.
   Patients with sickle cell disease and their families must cope with the impact of repeated and unpredictable pain episodes, chronic pain, chronic anemia and easy fatigue which cause absenteeism from school and work, hospitalizations, and fear of early death. There is no consistently effective, widely acceptable treatment for sickle cell disease. The prognosis is uncertain and complications are variable and often not measurable (as in vaso-occlusive pain). Complications are often inadequately managed due to attitudes among health care workers and their unfamiliarity with the disease.
   Treatment requires a multi-disciplinary approach with adequate therapy for pain, infections, other acute complications, as well as attention to psychosocial and spiritual needs."
   (http://www.ihtc.org/patient/blood-disorders/sickle-cell-disease/simple-facts-about-sickle-cell/)