Hi! It's me Karen.
Yesterday wasn't a good day for me. I had this dizziness early in the morning and the tormenting part is when I rest my head in bed, my head aches and then I vomit. I took paracetamol for the pain twice with 4 hours in between and took a nap while sitting up and with my head bowing down and not resting. After that, I decided to go out with my parents for fresh air and a little exercise and it helped me a bit to feel better.
I am not sure if it is because of my meds, my eyes or indigestion. But I'm glad that's over.
We also went to my dad's insurance company if they can cover ATG as treatment when I go back to the Philippines, if we can raise a starting payment for it through fundraising. I've thought of ideas to help raise funds and be an advocate for the awareness of our rare and most often misunderstood disease.
Right now, I've copied these information from the reference also included below for you to have a bit more understanding about my illness, if you haven't read about it yet.
Please wait for more updates on this blog. I am also looking forward for your support in our fundraising. God bless!
What is Aplastic Anemia?
Aplastic Anemia is a rare disease (affecting only 2 in a
million people) in which the bone marrow and the hematopoietic stem cells that
reside there are damaged. These causes the deficiency of red blood cells,
platelets and white blood cell counts.
It is most prevalent in
people in their teens and twenties, but is also common among the elderly. It
can be caused by exposure to chemicals, drugs, radiation, infection, immune
disease, and heredity. However in about half the cases, the cause is unknown.
The definitive diagnosis is
by bone marrow biopsy; normal bone marrow has 30-70% blood stem cells,
but in aplastic anemia, these cells are mostly gone and replaced by fat.
First line treatment for
aplastic anemia consists of immunosuppressive drugs, typically either
anti-lymphocyte globulin or anti-thymocyte globulin, combined with
corticosteroids and cyclosporine. Hematopoietic stem cell transplantation is also
used, especially for patients under 30 years of age with related, matched
marrow donor.
What are the symptoms?
- - Anemia with malaise, pallor and associated symptoms such as palpitations
- - Thrombocytopenia (low platelet counts), leading to increased risk of hemorrhage, bruising and petechiae
- - Leukopenia (low white blood cell count), leading to increased risk of infection
- - Reticulocytopenia (low counts of reticulocytes, that is, immature red blood cells)
Treatment:
- - Daily medicine that suppresses the immune system
- - Bone Marrow Transplant
- - ATG with cyclosporine
- - Chemotherapy with cyclophosphamide
- - Stem Cell Therapy
Ref: https://en.wikipedia.org/wiki/Aplastic_anemia
Some misconceptions about
Aplastic Anemia (according to my experience):
- - AA is nutritional anemia. It is iron-deficiency and can be treated by just eating food with high iron levels.
- - It is treatable with continuous blood transfusion.
*It helps
in maintaining the blood count in a considerable level to be able to continue
life.
- - AA is cancer.
* It can be
treated with some of the same procedures (chemotherapy drugs and bone marrow
transplantation) that some cancers are. As a result of its similar protocol,
however, aplastic anemia is most often treated in a cancer center.
- - AA patients become normal after every blood transfusion.
The misconceptions above are opossite of what is truly happening in our situaton. Please message me if you have any questions. Thanks!
Photo is not mine. Got it from: credit: http://rlv.zcache.com/aplastic_anemia_awareness_1_poster-r42c9c520629448b18542fa32cc326a35_w6a_8byvr_512.jpg
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