Rare Disease Awareness Day

Yesterday was Rare Disease Awareness Day.  It is day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. To start with, I was unaware of the day and unaware that I have a rare disease. I mean, I know I have ITP. I just did not know ITP fell into the category of a rare disease. I had been planning to write about ITP. After hearing about Rare Disease Awareness Day, I decided now would be the best time.  ITP is considered a rare disease because there is fewer than 200,000 US cases per year. 

The official name is Idiopathic Thrombocytopenic Purpura. See why I always just use ITP instead? I always explain ITP as a blood disorder where my dumb blood cells think my platelets are a disease. Then my dumb blood cells attack my platelets. This not only causes lowered platelet counts, but also, causes my blood cells to be too busy fighting my platelets, so they cannot fight off real illnesses. So my immune systems sucks.

I was diagnosed with ITP in college. I had a bad reaction to preventive migraine medication. I ended up in ICU. A side effect of that medication was lowering your platelet count. (At the time of being prescribed that medication, I did not know that I had ITP.) By the time, I ended up in the hospital my platelet count was 5,000. A healthy platelet count ranges from 150,000-400,000. You can understand why the doctors were alarmed. It was a super scary time. The doctors first thought I had a form of cancer. I had a bone marrow biopsy, which was painful. Then I had to wait for the results which ruled out cancer and a few other things. I was officially diagnosed with ITP on July 15, 2000.  

I had to go 3 days a week to get my blood drawn and platelets counted. My veins are still not over that. We tried many treatments but I was a rare case. Nothing worked, except stress. Around finals, my platelet count would soar. The doctors decided removing my spleen would be the best option. Your spleen is wonderful and important, but you can live without it. One function of the spleen is storing the platelets. If you remove the spleen, the platelets would have to remain in your blood stream and not chillin in your spleen.  On March 7, 2001, I had splenectomy, which works for about 1/2 of all those who have ITP. This worked for me. 

My platelet count has remained high for the last almost 15 years. ITP in adults is chronic. I will never be considered healed or cured. I'm considered in remission. I get my platelets checked yearly and before any surgery or procedure. The reason I get checked is there have been cases of ITP coming out of remission, even after long periods of remission. My immune system will never recover. Remember I wrote that spleens are wonderful. Spleens are part of your immune system. Spleens act as a filter for blood for your immune system. Also the spleen fights off certain kinds of bacteria that cause pneumonia and meningitis.  

Between ITP and no spleen, my immune system is awful. I catch every cold, flu, etc.  and it takes me longer to fight it off. For example my daughter had a nasty stomach flu. My husband dealt with most of the vomit. When I had to help clean up, I washed my hands thoroughly. I still came down with the same bug. It took her three days to feel better. Because of my weak immune system, it took me over a week to feel better. Colds can easily turn into pneumonia or bronchitis. My doctor is constantly reminding me that flus can turn deadly for me. That is not me over exaggerating. I ended up in prompt care this fall wth the flu. Usually you don't get treated for the flu. The doctors treat my flu in fears of it turning into a death sentence. I have to receive vaccines yearly. My family does, too. Because anything they bring home (common cold to strep throat) can have damaging repercussions for me. 

People often give me a hard time for "always being sick" and tell me I should get checked out for something serious since I'm always sick. Thanks for your concern. I have been checked out. My doctors are wonderful and help me as much as possible, but this is my reality living with this disease. I truly feel blessed and lucky because there are people fighting much harder health battles. 

Feel free to message me with questions. 

PS We have not found a connection between my migraines and ITP. But I keep looking for it. My migraines have gotten much better.  They are still an issue from time to time but much mor manageable. Once again message me if you want more information.