Our journey, the birth of Haemophilia Foundation of Uganda and present status of Haemophilia Care in Uganda

This is going to be a mixed bag, since I am new to blogging. However, I hope that I have succeeded in honestly portraying the essence of our journey.

We (my family & I) came to Uganda in January 2008. Ever since we learned that our son was haemophiliac, his care was always the number one concern that needed to be addressed while making any decision. Deciding to relocate to Uganda was hence put through the scanner. One of the initial apprehensions I had was whether my son would get medical support for his condition here. This lead to research which, in turn lead to the knowledge that there was no Haemophilia Society here. Before reaching Uganda, all we were interested was in making sure that our son got the support he needed.

Then, I started writing to each and every e-mail i.d. I could lay my hands on, requesting support. The majority did not bother to respond, some did but professed inability to help, a few could not help but directed me to others who they thought could help.

In the process, January came and we flew to Entebbe. The first thing to hit us was the beauty of this country. Slowly, the stark poverty also became very evident. The thought of a Haemophilia society for Uganda grew roots and before we knew it, it consumed us.

After about six months (I started in October 2007, when we decided to relocate), in February 2008, I saw a blog by Laurie Kelly, who heads the Kelley Foundation, where she recounted her experience while helping set up haemophilia society in Zimbabwe. Hoping to get a response, I posted a comment on her blog. Laurie is a great lady and a mother of a haemophiliac herself. She responded and then on things started moving, because we had someone to show us the way. Whatever good we may manage to do, kudos to Laurie.

Then, very apprehensively, I wrote to my alumni association. I feared whether people would believe, what the reaction would be as 20+ years ago - in college I was very different from what I am now, would they connect with the 'me now'?. Not that I think I am very mature or grown up now, but the University of Life teaches lessons that no College can ever teach.

Three people I have to mention here are -
1. Sudhir Suvarna, who is in Australia - Sudhir is the person who responded to my call on the alumni association and the one who created this blog and taught me to blog.
2. Manoj Nair, who is in Canada - he has been on chat with me since I wrote to the alumni, supporting me morally.
3. Shailendra Sinha, who I believe is in the US.

These three guys have promised to support and try to garner support for the Foundation.

Laurie, Sudhir, Manoj and Shailendra, mere thanks cannot portray your contribution, but I guess that's the only word in the English language. Thanks a lot! Without all of you, wouldn't I still be at sea?

I met with Dr. Nzaro, who heads the Haematology Department at Mulago Hospital in Kampala. Dr. Nzaro is 74 years old and looking forward to retire in June 2008. He has got loads of experience. He remembers having treated Hemophiliacs in the early 80s. After that, since they could not provide support, the number of patients coming to Mulago Hospital started dwindling and now there are none on their records. He says that since this country is plagued with Malaria, Meningitis, Ebola, etc., Haemophilia has lost its priority in the government's eyes.

I asked him whether Uganda warrants a Hemophilia Society since I wondered why nobody thought of a Society before. He is of the opinion that yes, we do need a Society and that when we start and once people are aware, there will be people coming forward.

Also, the acute need for diagnostic equipment is felt. They also have personnel at the level of technicians but not above that, meaning that hematologists are few.

Now to the brass tacks, for the project to be successful, we will need to go the whole way -
1. setting up the Society - will require its own office (for starters, my house will be the office), registration with the appropriate authorities (ROC, NGO board);
2. creating awareness in the country - reaching out to the Doctors in the country will help and getting the doctors themselves to write to the others will help;
3. make the product available here - getting permission to import the drugs here, etc.; and
4. distribution of the correct product to the correct people.