Today is the first day of September, the day that ushers in sickle cell awareness month in the United States. Many local sickle cell organizations and groups have been gearing up all year with various events, fundraisers and celebrations planned. Many of us have plans, whether it is the SCDAA convention in DC; the Very Bright event in Seattle or various activities around the nation (which you should check the Events tab to the right to find something near you).
What have you got planned to celebrate sickle cell month? Besides the fact that it’s a month dedicated in raising awareness of this debilitating condition, it’s also a milestone of celebration. You have survived one whole year with sickle cell. From last September to this one, you have learned so much of your illness, you have been hospitalized, in crises, in pain, and yet you still are here.
There is much to give thanks for this month and so many accomplishments that sickle cell has had this year. Whether it’s been from the breakthroughs in research, the advances in stem cell and bone marrow transplants, or the fact that we finally have a big Pharmaceutical company in our corner (go Novartis)…or even on a personal level, that this year you have been sick less, hospitalized less, lived and travelled more…there is alot to be grateful for.
And yet at the same time, there are still so many strides that must be taken. Death from sickle cell complications are on the rise, there are not enough donors of blood, stem cells or bone marrow, patients are still being treated terribly in hospitals, and unfortunately Hydroxyurea is the only drug of choice when it comes to a pharmaceutical treatment option.
The US is not the only country with issues of sickle cell management. Treatment is other countries is even more abysmal than ours. In India, 20% of the population have sickle cell and the government is only just mobilizing it’s health department to try to contain this disease; while patients in Bahrain are still dealing with gross negligence in their medical center, in which over 20 patients have died this year alone. In Ghana, the only sickle cell center closed, a couple of months before an integral SC worldwide conference was held.
I could go on and on, but I know you get the message. Sickle cell has been around for 100 years. It was the first discovered blood condition, and yet, so much still needs to be done. So on the eve of our month of celebration, as you participate in activities, advocacy and conferences, please keep in mind that there is much work to be done, and gird yourself for the exciting journey into the future. You cannot sit back, just complain and be complacent! Do your part to raise awareness. We each must take a stand, break sickle cell silence, and take part in ushering in a new tomorrow.