Once a year, my family and I visit Washington, D.C. We go each year to further investigate our medical disorder.
Due to our medical disease, Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS) we need to go to the National Institutes of Health (NIH) each year, as that is where they research our genetic disease.
Each year the doctors run a series of blood tests to make sure the research and diagnostics of our disease is up to date. There is a team of doctors at the NIH that study our specific disease 24/7. Their entire job description is studying the basics and ingenuity of diseases that are unknown to mainstream doctors.
Our disease is not the only disease that is being currently researched at the NIH. There are millions of diseases that are being researched and studied throughout the institution.
When the doctors first discovered what it was that we had, there were only 12 known families of the same disease. Now, as of January 2014, there are over 300 families in the world that are diagnosed with TRAPS.
Both of my siblings, my brother and my sister, have the disease as well. We each inherited it from my dad. When we found out what we had, we learned that it is dominantly inherited. We did not know exactly how my dad came to have the disease, as his mother tested negative.
When we found out what we had, his father had already passed away, so the doctors could not test him for it, and he was an only child. So we have made an estimated guess that my dad has received it from his father, but there is no evidential proof.
We will continue having to go to Washington, D.C. each year in order to keep up with how our disease is going. The doctors researching it continue to try different medication on patients constantly, as they have done this with both my sister and I.
The doctors originally put my whole family (the ones who have TRAPS) on a medication called Enbrel. Just like any medication, Enbrel works for some patients more than others. As for me personally, Enbrel worked quite well my first 12 years of taking it, but as I continued to take it, my body began to get extremely used to the drug, and was not as responsive as the doctors would like it to be.
Because Enbrel was not giving my body the response the doctors were looking for, they put me on a new medicine called Kinaret (Anakinra). This medicine is a daily injection, and is quite painful, but the long term effects of the medicine are well worth it.
Families, just like ours, travel from all over the world to go to the NIH in order to become part of the doctor’s research. This is exactly what our family did. If it were not for the doctors and researchers, we would not even know what type of disease we had, or if it were a disease at all. Our family is extremely grateful to what the team has done, is doing and will continue to do.
This writer can be reached via Twitter: @KathrynnnnnD. Follow The Feather via Twitter: @thefeather.
For more opinions, read the Jan. 15 article, Junior enjoys Utah ski resort, luxury.
