Celebrating Cerebral Palsy Awareness Month, Kwale County.

March is Cerebral Palsy Awareness month. And in Kwale County, the Cerebral Palsy Foundation- Ukunda, a community based organization (CBO) that specializes in serving the needs of persons living with this condition and their care givers did just that.

?In collaboration with persons of good will, their development partners, partner CBOs, and persons affected by CP gathered at their center in Gombato to share their experiences and to recommit themselves to their service. Increasing awareness about cerebral palsy can help promote understanding and support for individuals with the condition.

Cerebral Palsy is…

a group of neurological disorders that affect movement, muscle tone, balance, and posture. And is the most prevalent motor disability in childhood. Caused by damage to the developing brain before, during, or shortly after birth, it has been seen to affect children well into their early years of development. Cerebral means having to do with the brain, and Palsy means weakness or problems with using the muscles. Presenting with symptoms including exaggerated reflexes, floppy or rigid limbs and involuntary motions which appear by early childhood.

The Journey of Cerebral Awareness in Kwale County

Increasing awareness about cerebral palsy helps promote understanding and support for individuals with the condition. Pushing for positive change in education programs, in the health care system, and in the community where stigma has caused many to keep their children and loved ones with CP under lock and key. As Cerebral Palsy Awareness month grows, more people are coming forward to share their lived experiences. And more organizations are now coming forth to work towards making sure persons living with cerebral palsy get a voice and have access to quality health services.

Cerebral Palsy Ukunda

This however wasn’t always the case. Prior to the establishment of the Cerebral Palsy Foundation- Ukunda in 2012, parents and patients had to contend with lack of care and specialized therapies. For context, once diagnosed the patients are to undergo mandatory physical therapy which needs specialized equipment to aid muscles and skeletal development. Beyond these daily therapies, they need medication to manage their mental symptoms such as seizures which are only accessible at specialized clinics/ pharmacists and at high prices. Additionally, some have need for wheel chairs and other assistive devices for movement. Their diet unlike that of children hitting normal developmental milestones has to be tailored to meet their daily nutritional needs.

ICCP-K (I Care Community Program – Kenya; Kwale Chapter)

?CP is a chronic/ lifelong condition and as such palliative care services (psychosocial, mental health, nutrition, and spiritual support) are needed for both the patients and the care givers. ICCP-K (I Care Community Program – Kwale Chapter) a partner CBO is working to bridge this care gap.

Challenges faced by Persons living with CP

The lack of dedicated funding has thwarted any potential advances into the care and management of cerebral palsy especially for the financially challenged. In many cases, once a child is diagnosed, the mother is abandoned by the father and left to fend for herself and the child with no support. And despite the prodigious work being done at the center, there’s still much that remains to be done to reach those living outside of Ukunda in the marginalized parts of Kwale (Samburu, Lungalunga, Kinango and Matuga sub counties).

How to Show Support during Cerebral Awareness Month

There’s a million different ways you can spread cerebral palsy awareness. One of the most popular ways is by wearing a green ribbon, or the color green through the month of March. And to show support for the cerebral palsy community in Kwale, you can:

·??Donate to organizations such as the Cerebral Palsy – Ukunda (CPU) working with the cerebral palsy community to meet their medical needs.

·??Partner with and support the work of organizations e.g. ICCP-K who are engaging government agencies to implement relevant health policies in Kwale County.

·??Encourage people to learn more about cerebral palsy by sharing photos and stories online using the hashtag #cerebralpalsyukunda through the month of March.

If you are interested in supporting the cerebral palsy community year- round, consider joining Cerebral Palsy Ukunda (CPU), and/ or joining ICCP-K as a volunteer.

Whether you or someone you love is affected by cerebral palsy, we celebrate you this month!

Written by:

K. Ababach Tamiru (RDN)

Health Programs Consultant

Founder Nilishe Health