Sickle Cell support Groups

by Lorraine Anyango

Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) is working towards partnering with the Tumaini Sickle cell Organization in creating support groups for people living with sickle cell disease (PLSCD).

Several support groups (SG) are to be formed in categories including Parents of children (Aged 0-8):  This group consists mainly of new and recently tested parents who attend (SG- Meetings) with their children.

Another group comprises children of age group 9 to 15, this will be split into two groups of parents and children after the consenting meeting. Yet another, children of age group15 -18,with parents’ consent will be attending Support group meetings on their own. The fourth groupis for adult warriors mainly youths and young adults who are ready to support the cause.

The partnership will see to it that the support groups will bring people with sickle cell challenges together making members realize that they are not alone.

They will provide a safe place to share problems and concerns and receive genuine advice without being judged or stigmatized.

They will also help to build better-coping strategies as they learn from one another and strengthen their resilience to overcome challenges that may arise.

 JOOTRH handles the largest number of sickle cell cases in the region, led by the CEO Dr. George Rae it has embarked on aggressively tacking sickle cell even through a multi Sectorial approach. 

A proposal given to JOOTRH spells out the responsibility of JOOTRH in the joint venture which includes Identification of PLSCD+ (Including Parents of infants), Providing Meeting Venue within the facility on agreed days, Identifying a Lead Contact person, and formation of a multi-disciplinary team that will progressively report to management the progress.

Tumaini is expected to facilitate and guide discussions, provide refreshments, be part of the training, conduct community support and follow-ups, and document good practices including the development of IEC materials

The main objective of this partnership is to increase awareness and knowledge of the community (women, youth, and men) about SCD, build the technical and organizational capacities of TSCO and the community to improve outcomes, and improve access to and utilization of newborn screening, testing, and genetic counseling services and follow up on parents to SCD positive newborns.

Tumaini was founded by Ms. Veronica Bitta- who serves as the Executive Director, she is a mother to a girl with sickle cell disease, and she learned about the disease by chance at 1 year 11 months.

“I accepted to move on and I’m committed to facing SCD head on, I was positively inspired to support others with the same challenge in a structured way, hence I prepared to change the tide of SCD through advocacy.” Ms. Bitta said.