Blogging so late tonight. Well at least I remembered to. Just wanted to share with you some facts regarding my disease:
1. PNH - is short for Paroxysmal Nocturnal Hemoglobinuria.
2. Paroxysmal means "sudden and irregular"
3. Nocturnal means "at night"
4. Hemoglobinuria means "blood in urine"
5. So basically it means "sudden, irregular episodes of blood in the urine at night or early morning.
6. Sounds pretty simple when I explain it. But the doctors, of course, will give you a more detailed explanation.
7. The only drug being used right now to control it is Soliris(Eculizumab)
8. Soliris is the MOST expensive drug
9. Alexion Pharmaceutical first tried to use this drug for Rheumatoid Arthritis patients, but it didn't work for that population.
10. It works on PNH patients. And this the reason why it is most expensive drug - this blood disorder is very rare
Just a few cool facts
1. I was the first PNH and pregnant patient at Kaiser Sunset
2. Most women who are pregnant and have this disease usually deliver early
3. My baby Danica came out just 5 days before the expected due date. She is one healthy baby!
4. Lots and lots of prayers from family and friends also help!
NEVER GIVE UP! GIVE EVERYTHING TO THE LORD. HE IS IN CONTROL, NOT YOU!!!