DOWN SYNDROME

STATE OF DOWN SYNDROME INCLUSION IN UGANDA

In more recent years, there has been a sluggish but substantial development of inclusive education for children with Down syndrome. However, this has not been the case in Africa, particularly in Uganda. This development of inclusive education is just starting here in Uganda.

What is Down Syndrome?

Down Syndrome is a hereditary disorder caused when abnormal cell division fallouts in an extra full or partial copy of chromosome 21. This additional genetic material causes Down Syndrome’s developmental changes and physical features.

Symptoms of Down Syndrome

Persons with Down Syndrome exhibit different symptoms depending on the stage of the severity of the condition. The key symptoms consist of:

  • Trodden face
  • Small head
  • Short neck
  • Swollen tongue
  • Upward slanting eyelids (palpebral fissures)
  • Unusually shaped or small ears
  • Poor muscle tone
  • Broad, short hands with a single crease in the palm
  • Moderately short fingers and small hands and feet
  • Excessive flexibility
  • Little white spots on the coloured part (iris) of the eye called Brushfield’s spots
  • Undersized height

What Inclusion Means

Inclusion in school can be explained as placing a student with a differing ability in a general education setting and supporting services to ensure a successful outcome.

Even though other parts of the world are thinking of including Down syndrome people in the school, we are still battling for inclusion in the community in Uganda. Several people having Down Syndrome have been segregated and referred to as curses. This explains why inclusion is a major call to all nations, especially in Africa.

WHERE IS THE PROBLEM? WHY IS UGANDA STILL LAGGING?

The problem is not that the people of Uganda are hostile to such incidents. Daniel Tumwine, a paediatrician at The Children’s Clinic in Naalya in Kampala, speaking to The Independent Newspaper says “lack of awareness of the condition starts at birth. He says health workers have not been formally trained to identify the condition and affected newborns are subsequently not diagnosed until childhood”

EFFORTS TO COMBAT DOWN SYNDROME AND RAISE AWARENESS IN UGANDA

However, as it has been the norm since time immemorial, a ray of light always sprouts out almost out of the blue in times of darkness and despair. As a result, several NGOs have come in to sensitize the masses about the Down Syndrome condition. Among these is Global Livingston Institute (GLI).

Since 2016, GLI has been involved in making the Down Syndrome condition known as well as pushing for inclusion. But there is still more to be done.

DOWN SYNDROME INCLUSION

Down Syndrome Inclusion is where people with this condition are accepted into the communities, schools or workplace but it’s more than that; there needs to be a combined effort from the community, government and NGOs.

An African proverb states that “it takes a village to raise a child”. Thus, efforts on building awareness and appreciation of Down Syndrome should expand beyond the family level to the community.

CONCLUSION

Inclusion means fully accepting persons with Down Syndrome into our normal lives and supporting each other as mother nature created us to be. To rephrase Martin Luther king’s words, “I have a dream, that someday we shall have an Uganda, Africa and World where inclusion is not talked about but rather acted as though it was a natural impulse.”

 

Israel Mayende Collins

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