Alani tells how he has become his own best advocate | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

Alani tells how he has become his own best advocate

“I never even had a cavity before I was diagnosed with PNH, plenty of denial later, I now live my life with PNH in it and don’t let PNH run my life!”

I lead an ordinary life, a healthy life.  My name is Alani and this is my story.

I was born in Massachusetts, raised by my single mom.  I grew up with my older brother and little sister. I did ok in school but my passion was for riding bikes and skateboards.  The highlight of my childhood was racing BMX bikes every weekend. My mind enjoyed thinking and going.  Mechanical comprehensions came quite naturally to me.  When I got into high school I enrolled in the welding program and obtained my certificate, it suited my thinking skills and kept me busy.

I was healthy as a horse, hardly ever sick. As the years went by I was invincible, working hard, playing hard, and raising my family, I even got engaged and was ready to settle down.  Nothing could stop me, I’d never even had a cavity.

Then it happened....... I got sick.  It was the fall of 2009 and I was 32.  I woke up one day and felt like I got run over by a truck, ok so I have the flu.  Days went by and I wasn't getting any better.  My throat started to hurt.  It hurt to even take a sip of water. Then I started to urinate blood. Finally I decided to go to the doctor. I went to the lab to do lab work and went home. 

The next day the doctor called and told me to come see her right away.  When I went to see her she explained my hemoglobin was very low and that I had a cyst on the back of my throat.  She could not understand how I was still standing.  She told me to get a ride to the hospital 12 miles away.  Once seen in the ER, they admitted me not sure what was wrong with me.  I got poked and prodded and had every test known to man run on me.  At the end of the week they discharged me still not sure what was wrong.

While it seemed I’d had every test done under the sun and there was no immediate idea of what was wrong with me and why my blood count was so low, I was lucky enough that the hematologist at my local hospital, Dr. Harriet Bering, who’d seen some cases before ran a rare test and was able to diagnose me the after the first week of my symptoms. She told me I had a very rare blood disorder, a type of bone marrow failure, PNH or paroxysmal nocturnal hemoglobinuria

There it was in black and white and I had no idea what she was talking about.  My fiancé went home and researched the condition.  Out of all the information we crammed into our heads, all the medical hargin jargin, only one thing stood out "ten years to live".

"Ten years to live!"

I shut down unable to understand or grasp what it all meant.  Was my life over, was I just gonna rot away and die???  I fell into a depression, taking medication, giving blood and blocking out what it all meant.  I am too young to be sick.  I don't even have a cavity.

Meanwhile my fiancé did just the opposite.  She researched and read everything available, and then reread.  She over researched and dove into the books and articles available.  And then she tried to teach me what she learned and it was still too much to take in.  All these medical terms, and side effects, and what the future could hold.

Over time my condition got worse and I started getting blood transfusions. And, as the year went on my need for blood transfusions became more frequent. Dr. Bering and I then discussed Soliris (eculizumab), an infusion that I would need to get every two weeks when my need for blood was at once or twice a week. The day finally came and I received my first infusion in July 2010.  Within weeks I started to feel better and my blood levels started to even out.

I have reached a point in my travels with PNH that I can usually tell what is going on with my body now.  When to go to the hospital and what to just suck up and deal with. I have my good streaks and my not-so-good streaks, but have finally come to terms with my condition and what it means. It does not mean my life is over, just that it has taken a different road. I am now able to pronounce the name of my condition and educate the various doctors I come across that have never dealt with it.  I have become my own best advocate.

The treatments and advances in PNH have come a long way in just the more than 4 years since my diagnosis.  And, it’s that clear that any life limitations are outdated and PNH patients can lead extra-long and healthy lives with the right treatment and habits.  PNH doesn’t run my life, I lead my life with my PNH in it.

I’ve also been fortunate enough to be a part of the Greater Boston AA&MDSIF Community of Hope that I was able to help start with my sister Melissa and the group has helped me immensely by meeting and interacting with other bone marrow failure disease patients, family and friends, as we all support each other.  We even learned some relaxing Tai Chi together at our last meeting to help fight stress and dealing with ongoing fatigue common to bone marrow failure disease!

I have paroxysmal nocturnal hemoglobinuria, and I am a survivor.

Oh and about those cavities, I still have none!