By Faith Lawino.
Tumaini Sickle Cell Organization which partners with Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) conducted a mentorship program for adolescents living with Sickle Cell Disease at JOOTRH grounds.
This partnership was forged due to JOOTRH’s aggressiveness in tackling Sickle Cell Disease even through a multi Sectorial approach. The facility also handles the largest number of sickle cell cases in the region.
The mentorship program revolved around discussing sickle cell disease in general, its diagnosis, triggers, medication as well as adherence. The young girls and boys were able to talk about their experiences, the challenges they face, and their support systems which aid in averting crises and preventing frequent attacks.
Tumaini Organization through their mentors helped to debunk myths and rumors about living with Sickle Cell Disease. One myth, in particular, is that sicklers usually die at the age of 12. The mentors explained calmly that People Living with Sickle Cell Disease live to old age. They prosper to start families, get jobs, and live normally as ever.
The mood in the training room radiated with vibrance as the young people, without doubt, were confident that they too were normal. The discussion continued touching on such issues as; the effects of Sickle Cell Disease on Education and Mental Health. The Sickle cell warriors hence shared their success stories as well as their support systems that are always there every step of the way.
The mentorship which is set to run for 8 months reached its peak by discussing matters of drugs and substance abuse, reproductive health, and sexuality. Importantly, the young people were taught about drug adherence and best practices to adopt as a person living with Sickle Cell disease. Some of the Sickle Cell Disease Triggers discussed were; infections, cold weather conditions, dehydration, and poor diet.
The ways to overcome these triggers are hydrating all the time, consuming a balanced diet, keeping warm, exercising to self-tolerance, and lastly continuous adherence to medication. It is also important to avoid drug abuse which can lead to organ failure.
Ms. Veronica Bitta, who was in attendance mentored on the topic of pain management. She is the Executive Director of Tumaini Sickle Cell Organization as well as the founder of the Outstanding Tumaini Organization.
The pain management strategies discussed include; Good medical care, regular checkups, infection prevention, and vaccination against influenza which easily affects Persons living with Sickle Cell Disease.
The other important pain management action includes regular measures of hemoglobin level. This ensures that there is enough blood in the body system. Ms. Bitta Plans to soon publish her book on Pain Management for People Living with Sickle Cell Disease.
Tumaini Sickle Cell Disease was founded in 2020. The organization does various activities including – patient advocacy. The group pushes for the free administration of medicine for people living with Sickle Cell disease. Tumaini organization does blood donation dives and distribution of small handbook on Sickle Cell disease to the Public.
The organization also conducts community mobilization which targets unmarried couples. This is to educate them on the importance of testing for Sickle Cell Disease. This aids in knowing one’s state of sickle cell disease. The test is important to ensure that kids are not born with the disease. People with Sickle cell Disease find it hard especially during crises and the cost of managing Sickle cell disease is quite high. No parent would wish to see their kids in pain.
Tumaini SCD organization has different groups for people living with Sickle cell disease. They grouped according to age, from (0-5), (6-12), (13-18), and the adult group. They have a psychosocial support group for The Sickle Cell Disease Community.
Tumaini SCD organization with Ms. Bitta as a chaperone has had a milestone to make the life of persons living with sickle cell disease much better. The organization advocated the free administration of the Hydroxide drug. The government hence heeded that plea and currently, Hydroxine drug is given for free by KEMSA.
Sickle Cell Disease is genetic. The only way to prevent further cases of Children being born with sickle cell disease is to do tests for couples who plan to get married. The disease, for those born with it, can be managed. This is through regular check-ups, consistent adherence to medication, and adopting best practices to manage the disease.