My name is James Ilari and I was diagnosed with Severe Aplastic Anemia (SAA) at age 24.  I have decided to create this website to raise awareness and provide information about the disease, the importance of giving blood and becoming a bone marrow/stem cell donor, and finally to tell my story in the hopes it will help others battling the same illness.

 

Hi everyone... It's been 8 months since my last update, but really not much has changed.  My hemoglobin is still up, platelete levels have remained steady, and my neutrophils are well within the normal range... So far so good!...  I've been blessed to be so lucky to overcome this illness, but there are many others who are battling through it right now and need our help...

 

Since creating this website I've received weekly emails from people all over the world who are battling the same illness... most recently a young boy from the Philippines and a wife and mother of two young children from the US.  Blood donors and especially bone marrow donors are needed every day... Without your generosity many of us would not survive... Just knowing that there is someone out there that can save a life by registering for the bone marrow network brings hope to all who are in need... Although I may not be in that situation anymore I will never forget the constant fear and uncertainty I felt during those months... It is a fear no one should have to endure, especially a young child... I would like to thank everyone who has and continues to donate blood as well as thank all of you who have joined the OneMatch bone marrow and stem cell network.  You are truly giving the gift of life.

 

I also had an idea I think would really help other Aplastic Anemia patients... Many of the emails I receive come from family members of the patients, as well as the patients themselves... They are often looking for answers to questions about treatment, medications, etc... but more often then not they are simply thanking me for publishing my story.  The main reason for creating this website was because I found a similar site when I was diagnosed and it really helped hearing someone else's first hand experience dealing with the illness, treatments, procedures, etc... It was different from reading a medical article or a doctor's opinion of how certain procedures are supposed to feel... I believe you become less fearful of your treatments, procedures, and the illness in general because it takes away some of the unknown.  I am glad to hear this site is helping others as I believe it is serving its purpose... I have been fortunate that with the help of the media I was able to come in contact with many other aplastic anemia patients last year who all shared their story with me... and... just as this site has helped many... hearing all of these stories helped me also.  To know that there are many other people who have overcome this illness really gives hope and the strength to persevere to all who are battling through it.  So, I would like to invite all aplastic anemia survivors to email me their story... It doesn't have to be long or extremely detailed, just write what you want to share.  I will take each of these emails and create a new section of the site where they will be listed for everyone to read.

 

Aplastic Anemia may be rare, but to anyone who is battling through it just remember that you are not alone... There are many of us across the globe that have endured the same struggles and I would like to use this site to bring many of us together... I believe positive thinking goes a very long way in anything you are trying to achieve in life...  If your story can lift a person's spirit and start them on that path to positive thinking I truly believe that path will eventually lead to a recovery.

 

If you would like to share your story please email it to This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

Thanks,

 

James