By Beril Okendo
A problem shared is a problem half-solved. For people living with sickle cell disease, a problem shared is a heart healed and a burden lifted. Even though no one but themselves can comprehend the extent of pain that they go through during crises, these warriors resort to portraying bravery and facing their lives with a zeal whose urgency is only known to them.
Jaramogi Oginga Odinga Teaching and Referral Hospital, in partnership with Tumaini Sickle cell Foundation and other stakeholders, has developed a psychosocial support group for people with Sickle cell disease. The support groups’ mission is not only geared towards improving the physical but also psychological health of SCD patients. In these sessions, the warriors share their life experiences and uplift each other through heart-to-heart conversations.
The support group offers a platform for patients to talk freely about the pain and anguish that they go through during crises. A psychologist is also part of the team that provides counseling for the patients with a nutritionist present to guide the warriors on ways to live healthily with sickle cell disease.
Most times when going through crises, pain, and stigma, family members and friends may be around to offer support to the warriors but may not fully comprehend the extent of the situation that they go through. Narrating their tales to each other gives them strength knowing that they are not alone in the fight for survival. These sessions help them pick themselves up and encourage each other’s hearts even when it gets hopeless.
In these conversations, are tales of despair? From lack of money to afford drugs to frequent crises that leave some of them unable to carry on with their daily activities. In them also lay stories about the loss of opportunities due to their conditions. These, and much more stories of hope and resilience are just among the few that are discussed in the support groups.
The stigma surrounding Sickle cell disease is an issue that not so many people can relate to. The burden of chronic illness affects the patients socially and psychologically and is usually beyond their control. The most burdening part is that it hinders them from achieving some of their desired goals especially due to frequent crises which leave some of the adults dependent on their relatives and children unable to deliver good results in their academics. This often leads to low self-esteem and sometimes mental issues.
During the support group session at JOOTRH, Lisa, a 13-year-old warrior shares her tale and experience with sickle cell disease. “During crises, care for patients with sickle cell disease should be administered with urgency.”
Michelle, a sickle cell warrior who has survived the illness for the last 29 years shares that the road has not been easy. Discovering that she had a sickle cell at a young age was very devastating. Michelle attests that had she, not had a strong support system she would have given up the fight, having a supportive mother has empowered her to live a life full of inspiration to others. Michelle who is also a founder of the West Kenya Sickle cell Foundation says that there is a need to spearhead conversations that will initiate care and intervention for the disease burden.
To join Michelle and Lisa in the fight to survive sickle cell disease, JOOTRH wishes to encourage all sickle cell warriors and interested parties to engage in the support group and be part of a team that is determined to ensure that sickle cell disease does not define them.
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