The Founders Sickle Cell Story - The Global Initiative for Sickle Cell Anemia - GISA

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The Founders Sickle Cell Story

The Experience of Living with and being Affected by Sickle Cell Disease Varies from person to person and from one family to another, however the Challenges remain greatly damaging to the lives of people affected by SCD.

Muliki Joseph Enock and Alibonaku Diana are the Founders of The Global Initiative for Sickle Cell Anemia (GISA). Their dedication and commitment to providing relief to persons affected by sickle cell anemia is drawn from their personal experience raising their daughter Sophia. Their SCD story has seen them go through the most horrific experiences SCD can bring to anyone affected by SCD. Like many other people that go through the ravages of SCD, Enock and Diana's situation was characterised by continuous hospital visits and crisis attacks that happened at any time of the day but mostly in the twilight of the nights like at 0300 hours. Initially from when Sophia was little, they frequented the hospital because of Acute chest syndrome, this saw Sophia get multiple injections to the point that medics would struggle to find a spot from which to inject and or draw blood for tests which were mainly CBC (Complete Blood Count) tests. Eventually, we struggled through taking a decision to put Sophia on to Hydroxyurea which is a very expensive lifetime drug as this was deemed to be her solution to cut down on the frequent hospital visits, we would hardly make 2 to 3 months before we get another hospital admission.

Hydroxyurea was a tough decision for them because they harldy had peers to give them the support and encouragement. The talk about Hydroxyurea being a cancer drug was even more scary, they went ahead to make research on the drug and the feedback did not help make it any better. Their Paeditrician introduced them to another parent who had enrolled her daughter onto hydroxyurea right from three months and she would only walk with her daughter into a hospital for small treatments
Global Initiative for Sickle Cell Anemia
like a cold, and or a cough - nothing more!
Whereas we would walk into a hospital with Sophia when she only started coughing 30 minutes; they often found Sophia with almost 3 quarters of her lungs incapacitated and just a quarter of her lung fraction supporting her life. They had the scare that Sophia's lungs would completely fail and she would have to use an oxygen ventilator the rest of her life as her lungs would just become a weight to carry around if they failed, - for any parent; that would be gross. She finally got to start with Hydroxyurea, and this got her to improve her health greatly and hospital visits reduced.
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Eventually, Sophia got a really bad crisis that saw her blood clot within her body; that is a scare for any sane minded human. The Doctors had to physically run up and down to save her, Sophia had lost her senses she could hardly speak nor would she eat, she had basically gone into vegetative state. Thankfully; Sophia has always been a fighter - a real warrior like many out there; she managed to get through unscarred - So they thought! The damage had already been done; although this did not affect her lungs. About two months later, Sophia went into a crisis, it happened at about 0300 hours, most of her crises usually occurred at that time; she woke up that night and asked to 'take a pee', suddenly she couldnt help herself to the toilet like she always did, she cried and they thought it was one of those child tantrums, on a second look they knew something was not right - just like the crisis routine was; Enock and Diana got up and packed up fast to get to the hospital, there they were; Sophia got her blood tranfusions like the routine often was and this got her up and running, Sophia danced around for Enock and Diana as she has always been an animated soul, at that point, the Doctor took a sigh of relief from the scare of a stroke, Sophia later asked to go to bed and had a really long sleep, on waking up; just right after the Doctor thought a stroke was all in the past, Sophia awoke to a stroke, she couldnt stand or support herself to sit and she had lost her eyesight for two solid days - that was greatly scary.
Sophia's Sickle Cell Story
Enock and Diana had to take a hard time to see to it that they worked from the bottom to get Sophia to walk again; daily, it was a hard moment of walking Sophia through the lawns barefoot to make her feel the earth and perhaps trigger her sensory abilities to come alive. They had to go through a gruesome month of pain to get Sophia back on her feet, the Doctor had said that she would perhaps get back on her feet in 3 months and that got them counting every other day and it felt like a lifetime. Three months did not do the magic, Sophia's recovery stretched beyond 6 hard months that were characterised by teaching Sophia not to take pity on herself - but yeah sophia started aback from dragging, to crawling, to standing, to taking her first post stroke step, to running. Although her joints are not as perfect to this date; Sophia stands tall today and has her full cognitive abilities except for her joints on both the leg and hand - her life is a testimony to many warriors around the world.

Sophia's Pediatricians Doctor Sendijja and Doctor Rose are the heroes that Enock and Diana like to give the credit for her. Without the dedication and selflessness of these doctors and many other doctors that attended to Sophia, perhaps she would not be here with us. Perhaps without their support The Global Initiative for Sickle Cell Anemia would not be formed to impact the lives of a global SCD community. It is the above experience with Sophia and the encounters with the experiences of other persons affected by SCD that coerced Muliki Joseph Enock and Alibonaku Diana to establish The Global Initiative for Sickle Cell Anemia (GISA).
Global Initiative for Sickle Cell Anemia
A global SCD community powered by People, Participation and partnerships
The Experiences of persons living with SCD therefore defined the locus for which the organization was founded.

  1. To establish a global SCD community powered by People, Participation and partnerships
  2. To provide relief aid to those with sickle cell disorders and their families.
  3. To establish SCD emergency response teams to help person with sickle cell disorders when they desperately need help.
  4. To create an active global year round advocacy for SCD powered by SCD Communities and the internet of things.
  5. To create a peer led learning platforms supported by sickle cell clinics, persons living with sickle cell disorders and their families around the world.
  6. Provide leadership on a national level through the establishment of 'Warrior Teams' to create awareness of the negative impact of sickle cell disease on the health, economic, social and educational wellbeing of the individual and his or her family and to create awareness of the requirements for resolutions by governments to enact laws and policies that facilitate the improvement of health service provision to person with SCD.
  7. To establish legislative, policy, and medical teams along with law makers and medical practitioners around the world to help create internal awareness among law makers about the ravages of SCD and thereby work with them to enact laws and policies that help build an SCD response infrastruture that will drive the world to a permanent solution to avert the prevalence of SCD and SCD related deaths.
  8. To prepare and distribute substantive educational materials, written and visual, and to conduct seminars and workshops about the sickle cell disease problem for all relevant segments of our society to include schools, among teenagers and in communities.
  9. To organize and/or participate in national, regional and international SCD educational conferences activities.
  10. To develop a global database of persons living with the sickle cell disorder and the sickle cell trait.
  11. To track sickle cell right from birth and make follow up to ensure that persons born with SCD live a long life.
  12. To establish a medical fund intended to upscale the medical capacity of doctors to respond to qualitatively respond to SCD disorders and upscale hospitals within nations to obtain the capacities to conduct bone marrow transplants.
  13. To develop and promote the implementation of service programs that will be in the best interest of the affected population.
  14. To develop positions and promote favorable resolution of issues and activities that could have an adverse effect on sickle cell programs or the affected population.
  15. To create a global SCD community that will assist with the organization and development of local GISA chapters.
  16. To provide ongoing technical assistance to members and other interested groups or organizations.
  17. To encourage adequate support for research activities leading to improved treatment and eventual cure for both modern and African herbal medicine.
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