Featured Storyteller

UGANDA: Love, Work, and Sickle Cell

Juliet Acom
Posted April 18, 2018
Juliet and the parents of children with sickle cell disease in Nyamirima. Photo courtesy of Juliet Acom.

After her child was diagnosed with sickle cell disease, Juliet Acom made it her life’s mission to educate others.

“A problem shared is half solved, and when I do this work it helps me to release some of the stress I feel as a single mother with an ill child.

It’s 16:00 hours on a hot, dusty December Saturday. I am seated on a 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 myself to making funny faces at the children who are staring and giggling around me.

I let them ruffle my kinky maroon hennaed hair, as I smile and wave to the people around me. My translator, a primary school teacher, has since gone back to his home, walking five kilometers away from the mission grounds where, two hours before, we were helping families of children living with sickle cell disease.

Finally, my ride—a battered 1995 Sahara pickup truck—arrives and I am hoisted into the back by a jolly old man who seems bothered that I only understand about 25% of his stories. As we drive towards the town where I will grab 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 I am equally elated that my Saturday was well spent educating total strangers about genetic disorders. I provided counseling and information about nutrition for sicklers and natural pain management as an alternative to strong painkillers. On that day, I felt proud that I was able to dispel fears about sickle cell disease. I helped families to understand that sickle cell is not caused by evil spirits that only live in women and that are supposedly curable by witchcraft and animal sacrifice.

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. I share my story to stand with families and economically empower communities affected by the stigma that arises from lack of information on this disease that, according to statistics from the World Health Organisation, affects 5% of the world’s population.

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

In my efforts, I have met resistance, especially from absentee fathers of children living with sickle cell. 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! The fathers are usually resistant because it is assumed that these children will not live long. They prefer to spend those finances on children who are not sick. The burden of care, and blame, is left to mothers.

I know this story personally.

Eleven years ago, my son was diagnosed with sickle cell and I was left shattered. All I knew about the disease was that it definitely led to death. The nearby clinics I went to had no clue about treatments, and the government hospital to which I was referred was overwhelmed with a doctor/patient ratio of 1 to 40. There were just a few volunteer counselors who would come in twice a week to ask routine questions, give nutritional information, and provide medical information to those with sickle cell.

My experience led me to learn and gather as much as I could about the disease so that I could help my son and others in underprivileged communities. The more I shared my story and reached out to parents in similar situations, the more I was able to come to terms with my son’s condition and help him to manage it better. They tell us a problem shared is half solved, and when I do this work it helps me to release some of the stress I feel as a single mother with an ill child. Along the way, I have helped others release their own stress and realize they have support from someone going through the same thing.

Anywhere I go, the questions come in different languages, from people of all ages, sizes, and socio-economic backgrounds, but they are all the same: What is the best diet for someone with sickle cell? Which hospital is best? How can I involve my partner in taking care of my child? Will my child have a normal life? How will I manage to care for them and keep my job?

These were questions I used to ask myself, and thankfully I am now able to answer most of them for others. I have learned so much from online networks and online research, and I have been able to share that knowledge with the communities I reach.

I celebrate the existence of reliable, effective communication tools in this generation that have allowed me to access knowledge, connect with others, and share my stories. Social networks have enabled many of us to freely express our fears, share our challenges, and find support.

I have found places where I can crack jokes about the cultural stereotypes following single moms without being “too careful.”  These networks help us to soldier on, fight, stigma, and most of all keep faith in emerging solutions.

I am committed to educating all so that we can prevent this disease and bring solutions to the forefront for those who are suffering. I hope that by sharing my story hope will be restored to families affected by sickle cell, and that they in turn will be inspired to reach out to others as I have done.


STORY AWARDS

This story was published as part of the World Pulse Story Awards program. We believe everyone has a story to share, and that the world will be a better place when women are heard. Share your story with us, and you could be our next Featured Storyteller! Learn more.

Comments 42

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  • Gladys Muthara
    Apr 18
    Apr 18

    Juliet, you are a phenomenal woman! The world is truly becoming a better place because of your efforts, to help others learn from your experiences and prevent sickle-cell. I know for sure it's not an easy task, moving from one remote village to another while educating women and men alike, but I know for sure that it shall pay off, eventually. My sister, keep doing the incredible work you have already, so courageously started. With much Love, Hope, & Light

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Gladys,

    Thank you for the feedback and uplifting words.

    Your response gives me more confidence to keep educating people about sickle cell and You are very right, village transport and communication can be interestingly challenging. It is my prayer to come to Kenya on this mission sometime and I do hope we shall meet.

    Best Wishes

  • Elsie Amegere Zion
    Apr 19
    Apr 19

    Awesome. Your 1:10 one woman in ten men. May God increase you.

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Elsie,

    Thank you for your kind words, they give the strength to soldier on.

  • I have seen you go through the tougher times of the days. But I have not seen you give up on any single day. You're a phenomenal woman. God bless you and the work in your heart.

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Harriet,

    Thank you for your wonderful words of encouragement and support.
    God bless you too.

  • jlanghus
    Apr 19
    Apr 19

    Hi Juliet. Congrats on winning the story award. Looking forward to seeing and hearing more about what you're doing. I would also love to hear more about your collaboration with Dorothy:-) Have a great day!

  • Juliet Acom
    Apr 23
    Apr 23

    Hi Jlangus,

    Thank you so much, I am truly honored and grateful to World Pulse for giving women a platform to connect and share their stories.
    I am looking forward to meeting Dorothy and we shall be back here with details.
    I wish you a pleasant week ahead.

  • jlanghus
    Apr 23
    Apr 23

    You're welcome:) Yay! You, too...

  • julie_7
    Apr 19
    Apr 19

    What an amazing story of resilience, the world is definitely a better place because of people like you Julie who look beyond their own challenges and share with others. You're an amazing woman.

  • Juliet Acom
    Apr 23
    Apr 23

    Thank you so much for these kind words, they give me courage to keep educating others about sickle cell.

  • Clodine Mbuli Shei
    Apr 19
    Apr 19

    Oh Juliet,
    What a great woman you are! Exploring knowledge and sharing to give hopes yo others is such a fulfilling life. Courage on your work. Its challenging and takes heroines like you to brave it. Courage

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Clodine,

    Thank you for the encouraging words and I must commend you for the great work you are doing in Cameroon, promoting menstrual health - the PAD IN A BAG campaign! I do hope we can share ideas sometime soon.
    Many parents of girl children living with sickle cell focus on the disease and mostly worry about what will happen at the onslaught of menstruation. We must encourage them to prepare the minds of their little ones to embrace this milestone in womanhood when the time comes and to involve male relatives in supporting safe menstrual health practices.

    Best wishes

  • dhatemwa Ag-ee
    Apr 19
    Apr 19

    This story is inspiring and touching at the same time, Julie keep breaking the silence, keep fighting the stigmatization in the communities we live in. The fight has just began, we have to do this together in order to keep hope alive for children, people with sickle cells plus their parents. Thanks for sharing, who am I to read about this great advocacy that you have started. The sky is nolonger a limit Julie.

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Ag-ee,

    Thank you for these encouraging words, indeed we must keep hope alive for persons living with sickle cell and their families though education.

    Best wishes

  • maureen_3
    Apr 19
    Apr 19

    Wow what an inspirational you are Julie... U have indeed showed that not even any condition can deter you from helping others... Keep it and God bless you always

  • Juliet Acom
    Apr 23
    Apr 23

    Hi Maureen,

    Thanks so much for these uplifting words.
    God bless you too.

    Best wishes

  • Olutosin
    Apr 19
    Apr 19

    Your work is amazing. Thanks so much for sharing about your personal journey with your son with our community. I'm so elated to read further that you are sharing your knowledge with others, especially people who are in remote areas with little or no access to correct information.

    You are an angel.

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Olutosin,

    Thanks so much for your feedback, i truly appreciate it and must commend you for sharing with us your journey with gender based violence. I have seen it in different forms as i go about educating rural communities about sickle cell disease - absentee fathers, women being rejected as the cause of the children's condition, you will visit the clinics and realise that 80% of the caretakers are women - to mention but a few.
    Thank you too for the amazing work that you are doing.

    Best wishes

  • Adanna
    Apr 20
    Apr 20

    Dear Juliet,

    You are a strong woman. Your commitment to educate more people about sickle cell is a good one.

    Many are inspired by your story. I salute you sis.

    Love,
    Adanna

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Adanna,

    Thank you for taking the time to read my story and for the wonderful feedback. I am grateful to world pulse for this platform that enables me to hear from other phenomenal women such as yourself.

    Best wishes

  • Ann Forsthoefel
    Apr 20
    Apr 20

    Juliet

    It is amazing what you are doing
    May you be blessed for the knowledge you are sharing

    Kindly
    Ann

  • Juliet Acom
    Apr 23
    Apr 23

    Dear Ann,

    Thank you for taking the time to read my story and for the encouraging words.
    God bless you too.

    Best wishes

  • Adeola Samuel
    Apr 20
    Apr 20

    I see grace! You are stronger than you can ever imagine. God bless your heart.

  • Juliet Acom
    Apr 23
    Apr 23

    Hello Adeola,

    Thank you for taking time to read my story and for the feed back. I am honored to share a platform with women such as yourself and you are doing great work supporting girl child education.

    God bless you too.
    Best wishes

  • Adeola Samuel
    Apr 23
    Apr 23

    Thank you dear Juliet. Amen n may you continue to find encouragement and timely support in your work.

  • Sister Zeph
    Apr 24
    Apr 24

    oh my sister you are the best and a most brave lady, I can understand how difficult it is to have a child with sickness and being a single mother, you are an inspiration for us all, your story is really changing lives Bless you

  • Juliet Acom
    Apr 25
    Apr 25

    Thank you sister Zeph,

    Your own story gives me more zeal to pursue this cause.

    God bless you

  • How selfless, dedicated and brave you are, Juliet, for campaigning awareness on sickle cell!

    Your passion and love to educate and empower are commendable. How do you do it? Wow, just wow!

    My 4-year-old son has special needs, and it is a daily challenge. That is why I honor you for your commitment to reach out to communities. You did not let your circumstance to hinder you to care; instead, you use it to encourage others to hope and find solutions. Kudos to you!

    You are an eagle who is unfazed by the storm. You chose to soar above it. I hope I can do the same in the future. You inspire me.

    Congrats for being a Featured Storyteller!

  • Juliet Acom
    Apr 26
    Apr 26

    Hi Karen,

    Thanks so much for your kind words.
    God bless you and your son, it is no easy task but best to take each day as it comes.

    Best wishes

  • Bugendage Rose
    Apr 26
    Apr 26

    Julie, you are a great woman. A woman with resilience and the strength to find the positive in every situation. A woman who puts her own pain aside to see other's smile. May the Lord reward you and your son a long life. And may He continue using you to put a smile on other mothers' faces as they walk down the path of this misrepresented sickness. Educating those parents about sickle cells and teaching them how to handle their sick children is already solving 70% of the burden they have. I am proud of you sis

  • Juliet Acom
    Apr 26
    Apr 26

    Thank you Rose for these kind words. They encourage me to not give up on this cause

  • Musenge Musomali
    May 06
    May 06

    Wow Juliet, you are doing a remarkable job. It is not easy to deal with these kind of conditions even in my country Zambia. I am proud of you for reaching out to other people and helping them to understand more about sickle cell. Thumbs up. Would be amazing if I can meet you at the end of this month, I will be in Kampala for a couple of days. You are an amazing person.

  • Juliet Acom
    May 08
    May 08

    Hi Musenge,

    It will be a great honour to meet you, your experiences inspire me alot.
    Do email me details so we can plan :)

    acomjacom@gmail.com

    Cheers

  • Musenge Musomali
    May 08
    May 08

    Hi Juliet,

    Glad we have connected, see you in soon.

  • Juliet Acom
    May 08
    May 08

    Looking forward my sister :)

  • QueenVirtuous
    May 12
    May 12

    Hi Juliet Acom.

    You are doing such a great job sensitizing and educating these women about sickle cell anemia. Wish we had women like you back in my day. What you are doing is a very great work that is very demanding, but the people are blessed by your sacrifices. Thank you.

    Yes, it is a thing to celebrate that we now have technology in this day and age to help spread the word about what it means to be living with the condition. And I'm talking not just about communication technology but also medical technology to help make life easier for people living with this condition.

    It takes love to fight stigma. These people are also being taught to be loving towards those who are challenged healthwise. You are also giving hope to the sufferers of this condition. How can we not be proud of you?

    Please carry on the good work you are doing and write us more about it.

  • Juliet Acom
    May 14
    May 14

    Thanks so much for the uplifting comments. You give me the strength and encouragement to keep doing this work.
    I am working on a short compilation to be used to teach the public about sickle cell. Will surely share it here.

    God bless you

  • QueenVirtuous
    May 14
    May 14

    Oh, absolutely darling! I'd love to see it. Knowledge is power. I really love what you're doing. I'm staying tuned to your channel. ;-)

  • J Brenda Lanyero
    May 17
    May 17

    Hi Julie, you are really a change make. I would try to fit in your shoes from all angles but still I wouldn't walk as well as you are doing.
    Thank you for being that Super mum that God created you to be and thank you for not abandoning your child at his grand parents' or any other place. I saw some women doing this most times but you are exceptionally amazing my dear sister in the Lord and in PUSH

  • Juliet Acom
    May 18
    May 18

    Thanks for the encouraging words dear.
    Many times I have met grandparents struggling with children as the mothers come to town and start a totally new life giving up on the little ones and leaving this burden to the grand mom in the village. It is a sad reality of how much stigma is faced by the sicklers including from their own parents.

  • J Brenda Lanyero
    May 18
    May 18

    I understand what you mean. I saw it a number of times.

    You are one in a million and a Super mum. Praying for divine blessings and strength upon your life.