Sickle Cell Thalassemia CAN Be Cured

There's always another way!

Sickle Cell Thalassemia CAN Be Cured

I am from Adana, Turkey and I was born in 1993 with a combination of two different red blood cells disorders called Sickle Cell Anemia and Thalassemia (Sickle-Thal.)

Sickle Cell Anemia (image 1): Regular red blood cells are shaped like a biconcave disk with a flattened center (a red blood cell looks like a donut) which helps them flow through the body smoothly next to one another. When sickle cell disease is the case, red blood cells lack oxygen and water which makes the cells form a sickle-like shape and the red blood cells get stuck to one another and cannot flow through the body, causing a great deal of pain in the joints, and the gathered up sickle shaped red blood cells get stuck to one another and cause infection around the bones and inside the veins due to the lack of motion. In the case of a patient who has the full disease, pains can be strong enough to stop the patient from being able to move and breathe.

Thalassemia (thal-uh-SEE-me-uh) is an inherited blood disorder that affects the production of red blood cells. A body with the full disorder of thalassemia lacks the ability to produce enough red blood cells and hemoglobin in the blood cells which helps the cells carry oxygen. The low hemoglobin and fewer red blood cells lead to anemia, leaving the patient in pain crisis.

In both of these cases, the patient can be treated for the pain crisis with blood transfusions and re-hydration of the body through IV fluids, but I was always told by medical professionals and experts that there is no cure.

Combination of Sickle Cell Anemia and Thalassemia (Sickle-Thal) WAS (past tense) my condition since birth, and I lived with it until I was 18. Growing up with sickle cell thalassemia, at least one week of every month in my life, I had pain crisis and was hospitalized to be hooked to an oxygen tube and IV fluids along with strong pain management through morphine which was not even strong enough to distract me from the amount of pain I felt through every crisis. My doctors from Turkey have told my parents my whole life to be prepared for my death from this terminal illness in my severe case before my age of twenty because each pain crisis causes more damage to the internal organs due to the lack of blood flow, water, and oxygen in the body. When senior year in high school came around and I was 18, everyone I knew who had the same health condition as I did and were as severe as I was, started passing away one by one and all of my family members were trying to hide it from me in order to keep my morale high. I never made future plans because I never thought I would live this long.

By the time I became 18, I was living in New York, and my doctors in New York were telling my parents that I had at most a year left to live in my body and that there's nothing we can do about it... How difficult it must be for a parent to hear that they have counted days left to spend with their 18-year-old daughter... My mother started calling doctors from ALL AROUND THE WORLD. She believed "there MUST be another way!" After days and nights and weeks and months of doing research for a cure, my mother found out about a treatment that is originally used as a permanent treatment for leukemia patients (in leukemia, abnormal blood cells are produced in the bone marrow), but it is only a study for sickle-thal patients, therefore, it is not advised for doctors to recommend it to the patients regardless of how severe the case might be because the risks are high and doctors don't want to be sued for suggesting this treatment to people in case if the worst cases of scenarios come to life.

!!!STEM CELL TRANSPLANT!!!

So here's how it goes; Bone marrow produces blood cells. When there's a disorder in the blood cells, the flaw must be in the bone marrow and instead of trying to treat the blood cells through blood transfusions, why not treat the bone marrow?

What is a Stem Cell?

Stem cells are the most basic forms of cells that can be shaped into any tissue, therefore, any organ that is vital to life. They are a class of undifferentiated cells that are able to differentiate into specialized cell types. Stem cells are produced in two different stages of a human being's life cycle. One is embryonic stage and the other one is the adult cells. They can be collected from the belly cord of the baby when the baby is first born, which are called the cord blood cells, and people have the option to freeze the cord blood at birth, but it is very expensive (of course). Stem cells can also be harvested from the bone marrow of an adult through the spinal cord.

STEM CELL RESEARCH is a big study on curing countless disorders and diseases through a transplant, along with creating new organs.

Now in My Case:

I was 18 by the time we found out about the possibility of a cure through stem cell transplant and the oldest patient to be a part of this study on curing sickle-thal through a stem cell transplant hasn't even had her first period yet. When the body is younger, its ability to heal is faster, therefore possibility of a successful result is higher. I was already counting days so I thought "let's give it a try instead of just wondering every morning if today will be the last day for me." So we needed a donor with a tissue match which does not require them to have the same blood type as the patient does. Mother and father cannot be the donors for this procedure because a baby is a combination of both the mother and the father. Since cord blood is not an option for me, I have an oldest brother and an older sister who are also from the same mother and father as me.

After many visits to Long Island Jewish Hospital to run all of the tests on both of my siblings and me to see if they can be my stem cell donors, all we had to do was wait to get the results and see if my siblings are a match, and if so, which one is a closer match to me? The day we received the call from Long Island Jewish Hospital in regards to the results of my sister being a 100% match, my sister, my mother, and I were at the mall hugging each other, jumping and screaming in tears of happiness.

This treatment requires to wipe out the bone marrow which creates the unhealthy blood cells through chemotherapy (personally, I was always against the idea of chemotherapy my whole life). By the time the chemotherapy is completed, unhealthy bone marrow is completely wiped out of the patient's system. The stem cells that were harvested from the donor's bone marrow are introduced to the patient's body.

Bone Marrow: It is the flexible, spongy tissue inside the bones. Bone marrow produces blood cells. Along with red blood cells, white blood cells are also produced by the bone marrow. This means that the bone marrow is responsible for the immune system of the body. If there's no bone marrow, there's no white blood cells to fight any bacteria and viruses off. The defense is low, therefore if a patient's bone marrow is wiped out of the body, the body has zero immune system. This makes the body susceptible to diseases. Even a newborn baby has SOME immune system from the mother since the baby lives in the mother's womb and the immune system is developed and built stronger in life by being exposed to germs. However, a person who goes through a bone marrow transplant has NO immune system until the new bone marrow that is given to the patient starts functioning normally and starts building stronger there on, first starting with immunization shots and preventative medications to protect the body from external potential dangers.

So since the patient's immune system will begin to lower as the chemotherapy kills off the unhealthy bone marrow, the patient is kept in an isolation room of the bone marrow transplant unit, starting a day before the chemotherapy begins. Patients stay in the isolation room of their own until the chemotherapy, the transplant and the medications to improve the immune system are complete.

I have met many parents while they're crying because their children have sickle cell anemia and/or thalassemia, and the doctors have told them that there is nothing they can do other than to watch their children die slowly. So I am writing this to let people know that THERE'S ALWAYS ANOTHER WAY. Help me spread the word!

For more information, my email address is [email protected]

Thank you (=