I find myself sitting in my hospital room waiting for one last
test them I will go to my medical debrief and this trip will be done. I'm not sure that anything earth shattering has come out of this week, but I do now know lots more then when I arrived.
The reason I have come to the NIH is because they are running a study on people with Erdheim-Chester Disease. The benefit for them is they get my medical information and through their tests will come to understand more about the disease, it process, and the value of the available treatment options. The benefit for me is that I have had a whole hospital full of medical detectives trying to figure out why I have pain, why I am loosing weight, why my immune system is so compromised, etc.
One of my doctors here said, "at the NIH rare is normal and normal is rare". It has been nice to be somewhere for a week where because of the rarity of my disease I am "normal". The staff here is wonderful, the campus is beautiful (plus I got out of having to shovel snow during the storm), even the food was good. As nice as it is here, I am ready to go home.
The reason I have come to the NIH is because they are running a study on people with Erdheim-Chester Disease. The benefit for them is they get my medical information and through their tests will come to understand more about the disease, it process, and the value of the available treatment options. The benefit for me is that I have had a whole hospital full of medical detectives trying to figure out why I have pain, why I am loosing weight, why my immune system is so compromised, etc.
One of my doctors here said, "at the NIH rare is normal and normal is rare". It has been nice to be somewhere for a week where because of the rarity of my disease I am "normal". The staff here is wonderful, the campus is beautiful (plus I got out of having to shovel snow during the storm), even the food was good. As nice as it is here, I am ready to go home.
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.