My name is Victorina del Carmen De León, I am requesting your support for my daughter Carmen De León. My daughter suffers from a rare disease, since she was 20, now she is 24. The disease is called Myelodysplastic syndrome (MDS), which involvesalterations that can occur when blood cells are produce in the bone marrow and become abnormal cells. This causes the white globules, platelets and red globules to be lowered. Red globules are the ones most affected in Carmen, because her bone marrow is not generating them.
Myelodysplastic syndrome is difficult to diagnose, it is classified as a type of cancer in the bone marrow. Carmen has had trouble specifically generating red globules, so she lived fatigued, weak and every week for about ten months, she had to have blood transfusions to be able to stay relatively stable while she received a diagnose.
In order to diagnose the disease, different studies had to be carried out here in Guatemala however they did not discover what was her specific disease. Later with specific lab tests had to be performed where they analyzed the chromosomes through a bone marrow biopsy that had to be sent to Mayo Clinic in the United States, because Guatemala doesn´t have the technology to make them. To do this real was necessary spend a great sum of money, that really affect our family economy, and that was just the beginning.
Subsequently to treat the disease we had to perform chemotherapy treatments valued at $6,250 per month(for about one year) which generated us large debts so we had to mortgage the only thing that remained us, our house which so far has struggled to pay for it and we are about to lose it with the bank. After the year of treatment Carmen stopped receiving blood transfusions which meant a positive advance for her and our family, however this disease is not curable only remains to learn to live with it, in constant checkups and various laboratory tests, because this disease can degenerate in an advanced leukemia cancer.
Currently my daughter has to take a drug to reduce iron levels in the blood because due to transfusions this is highly elevated, which is dangerous for her body since if it reaches heart and other organs can generate various complications which would affect even more her current condition, this drug costs $1,200 per month. In addition, bone marrow biopsy must be performed every year to monitor in which state her bone marrow is located since as mentioned above it is in remission but not 100% cured since this syndrome has no cure there are only treatments to maintain herself and try to lead a life as normal as possible.
Today we decide with my family to ask for your support since we are in a very difficult economic circumstance so in these last 6 months we have not been able to buy the necessary medicines, perform the blood tests that it has needed or go to the different specialist doctors whowere constantly checked Carmen,because as a secondary effect of this disease, her immune system was very affected making Carmen suffer infections and allergy reactions in the intestine, the skin and respiratory system.
We are especially requesting your support as the next month should be carried out different laboratory tests and the most important of all the bone marrow biopsy which must remove a piece of gelatinous bone from the bone marrow in order to evaluate the current state of the disease and prevent it from moving forward.