LOVE, WORK AND SICKLE CELL

Juliet Acom
Posted March 26, 2018 from Uganda
THE SICKLE CELL CLINIC
Parents of children with sickle cell line up for medical attention at a government facility in Kumi district of Eastern Uganda

16:00hours on a hot dusty December Saturday afternoon finds me seated on the veranda of a semi-permanent house in a remote village in Nyamirima - Western Uganda. I do not know anyone here, I speak the language horribly so I just limit it to making funny faces at the children staring and giggling around me. I let them ruffle my kinky maroon hennaed hair, smiling and waving to the people around me. My translator, a primary school teacher has since gone back to his home - walking 5km away from the mission grounds where we held a sensitization exercise 2hours ago.

Finally, my ride - a battered 1995 Sahara pickup truck arrives and am hoisted to the back by a jolly old man who is unbothered that I understand about 25% of his stories and as we drive towards the town where I will take the night bus back to the city I feel a calming sense of joy, I wave at my new friends as we drive away leaving a trail of dust. I am exhausted and feel an oncoming headache but equally elated that my Saturday is well spent educating total strangers about genetic disorders and dispelling fears that sickle cell disease is caused by evil spirits that only sit in women! You see I have made it a life goal to travel to remote villages to share my own story; the story of a single mom raising a child with sickle cell disease; to stand with families and economically empower  communities affected by the stigma arising from limited information surrounding this disease which according to statistics from the World Health Organisation affects 5% of the world’s population.

It is important for the youth to know that as they carry out HIV/AIDS tests in preparation for parenthood, they should make it a priority to run a sickling test! In a country where many live on less than a dollar a day the only treatment for sickle cell - a bone marrow transplant costing over 80,000USD in Europe, America and modern Asia is but a dream. So prevention is the only way!

Along the way I have met resistance, especially from absentee fathers of children living with sickle cell but my pleas, cajoling and continued reminders have inevitably brought them to government medical facilities to learn how to manage the illness – just to get me off their backs. (In this work there is no giving up!)

My pursuit of creating sickle cell disease awareness has seen me gradually evolve from an Accountant to a Nutritionist, counselor, teacher and arbitrator (halleluiah)! The questions may come in different languages and from people of all ages, sizes and different socio-economic backgrounds but they are all the same – What should I feed my Sickler on? Which hospital should I take them? How can I involve my partner in taking care of them? Will my child ever have a normal life? How will I manage to take care of them and keep my job?

Let’s take a minute to celebrate the existence of reliable, effective communication tools in this generation. The plethora of social networks has enabled many of us to belong to at least one platform where they can freely express their fears, share challenges and find support.

A place where we can crack jokes about the cultural stereotypes following single moms without being “too careful” and where we are our brothers’ keepers constantly standing up to share our stories, soldiering on, fighting stigma and most of all keeping faith in emerging solutions.

This story was submitted in response to You Are a Silence Breaker.

Comments 4

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Jill Langhus
Mar 26, 2018
Mar 26, 2018

Good luck with your story submission, Juliet:-)

Tamarack Verrall
Mar 27, 2018
Mar 27, 2018

Dear Juliet,

What important and life changing work you are doing. Thank you for describing Sickle Cell Disease. I had heard of it but through your story have looked for more information. Your work creating ways even through humour to cut through the idea that this disease "is caused by evil spirits that only sit in women", is so critically important, and ironic, given that it happens by both parents being "carriers". The blaming for and punishing of women for every problem is at the base of what we are doing collectively. In addition to the prevention and ways to manage this disease that you are teaching, developing respect for these accused women is so important, and I am sure in ways life saving as well.

More power to you,
Tam

Juliet Acom
Mar 27, 2018
Mar 27, 2018

Thank you Tam,
Your response gives me courage and confidence to keep going

Jacqueline Namutaawe
Dec 14, 2018
Dec 14, 2018

Hi Julie thanks for the good work and good luck with the story submission.