There is a common saying that every human being has a challenge facing one or more challenge of disability.

This however is not a proven scientific fact because some of the categories associated of being disable are so minor to be recognized as a disability factor.

In Uganda some of the common disabilities identified include visual impairment, physical disabilities, hearing impairment, mental and psycho socio disabilities, intellectual disabilities, albinism and little persons who are categorized as persons with disabilities.

The 2024 Uganda Bureau of Statistics census report indicates that 5.7% of the population has a disability showing reduction in the figure of 2014 which stood at 12.4%.

Much as the Population is aware of other forms of disabilities, not much is known about little persons.

Daily Monitor Health Living Magazine caught up with scientists and little persons in an interview during a sensitization meeting about inclusive health and rehabilitation for persons with disabilities organized by National Union of Disabled Persons of Uganda (NUDIPU) and below are the details

Background

Little  people also referred to as Dwarfs exist across the globe including Uganda

Theyhave been part of the legends of many cultures in human history in continents across the globe countries such as

In Uganda people have negative attitudes towards dwarfs to the extent that they are looked at as a bad omen in a family.

Most of them are not taken to school because their parents look at them as wasted and unworthy, only good for circus, entertainment or slavery.

The genetics of Little People and Pygmies

Dwarfisim

Mr Andrew Mubangizi the Commissioner Community Heath department of Ministry of Health who is therapist by profession explains that Dwarfism is a medical condition that results in short stature. It is usually defined as an adult growth height of 4 to 10 feet

Dwarfism is often caused by genetic mutations, or changes in a person's DNA. These mutations can occur randomly before or during pregnancy, or be inherited from one or both parents. The changes in DNA end up causing limited growth with abnormalities in the legs and arms.

Most often dwarfism is caused by gene changes called genetic variants. In many children, it's due to a random change in a child's gene.

Other causes can include low levels of hormones and poor nutrition derived from the mother while in the womb.

Categories of Dwarfism 

There are two main categories of dwarfism and they include disproportionate characterized by an average size chest and shorter arms and legs or a shortened trunk with longer limbs

The scientific condition that causes dwarfism is called Achondroplasia and it is characterised by short limbs in proportion to the body and large head.

Both categories are inherited from either one or both parents having genes of dwarfism 

Disproportionate dwarfism symptoms

Disproportionate dwarfism usually doesn’t affect intellectual development unless a child has other rare conditions, including hydrocephalus which is excess fluid around the brain.

Symptoms of disproportionate dwarfism may include, adults maximum growth being 4ft, the chest and limbs being short, short fingers, wide space between middle and ring fingers, limited elbow mobility, disproportionately large head, prominent forehead and bowing of legs that progressively worsens over time.

Proportionate dwarfism symptoms

Proportionate dwarfism is caused by a medical condition which is inherited at birth but can develop in childhood thereby hindering growth and development.

One common cause is too-low amounts of growth hormone produced by the pituitary gland.

Symptoms of proportionate dwarfism include a smaller head, arms and legs. But all are in proportion with each other.

Other signs of proportionate dwarfism in children are slower growth rate than expected for their age, lower height than the third percent standard for age and delayed or no sexual development during the teen years.

In both categories, Mubangizi contends that other challenges of this condition is as a result of lack of calcium in body leading to weak bones and the hands cannot stretch.

In normal human growth, the bones grow for 25 years but this is not expected in little persons.

Other types

Tuner syndrome

A condition that affects only female children, caused by a missing or partially missing X chromosome.

Spondyloepiphyseal dysplasia

This condition affects the connective tissues of the joints, causing the trunk to be affected more than the limbs. 

Constitutional delay

Some children are short earlier in childhood because they are programmed to grow later than their peers. 

Medical treatment

Mubangizi explained that there is no cure for dwarfism but medication can be used to treat some types of dwarfism.

There is no cure for achondroplasia. Human growth hormone has no place in its management, as the condition is not caused by a lack of growth hormone.

Treatment focuses on the prevention, management and treatment of medical complications as well as social and family support.

However scientists in USA and UK who have carried out advanced research have come up with as a solution to treat Achondroplasia

The medicine is called Voxzogo that can treat achondroplasia in children and adults 

Voxzogo promotes bone growth in people with achondroplasia and has been approved in USA and Japan for children of all ages 

In the EU, it's approved for children 4 months and older with open epiphyses. 

It is administered as a daily injection under the skin by a caregiver. 

In one study, children who received Voxzogo experienced a mean height gain of 6.3 to 7.8cm over a four-year period. 

In the case of disproportion dwarfism surgery is needed to correct the  bones but in Uganda the service is lacking .

Pygimies

Pygmies are ethnic groups of people with an average adult male height of less than 59 inches.

The term is most commonly used to describe the Pygmies of tropical Africa, who are hunter gatherers that traditionally live in the Congo Basin.

However the Echuya Batwa, commonly known as pygmies, are an endangered group of people around Echuya Forest Reserve in Kisoro and Kabale Districts of South-Western Uganda.

Being a pygmy is natural process but having limited growth hormone binding protein and insulin which is a growth factor among the key molecules involved in normal human growth.

The African Pygmies represent a classic example of non-disease-related humans of short stature.

Pygmy children show normal measurement of size and glands and organs that release hormones into the blood stream until puberty while adult Pygmies show normal baseline and post-stimulation serum growth hormone levels but low values of baseline serum binding protein and insulin.

Live experience

Mr Joel Musana aged 45 years from Bugiri district is a small person who has been successful in life.

He has been able to study and holds Bachelor degree in Micro Finance Makerere University and he is currently working at Kampala Capital City Authority as a social worker.

Musana says he is the only child born as a small person out of nine children and both his parents are normal.

He is married to a normal lady and they have five children two of who a girl and a boy are small persons.

Musana is the chairperson of Foundation of Persons affected by Dwarfism (FPAD-U) and his team has so far mobilised 500 members.

The foundation is to empowered small persons to realise their full potential and live a dignified life.

It is Musana’s contention that little persons can carry out economic activities which are manageable.

On his part, he has poultry farm and piggery in his place in Gayaza, a Kampala suburb.

Some people are involved in carpentry and others assorted business ventures that can earn them income.

Health challenges

He highlights health challenges little persons face and these include, reaching the high counter to pick drugs from the dispensary, using latrines and urinals in hospitals and elsewhere which are high to reach, negative attitudes by health care personnel who utter stigmatizing words of abuse such as how did you get pregnant for the case of women.

Accessing Sexual reproductive health services from health centers is a challenge for ladies

Getting to the labor beds for Antenatal care  where nurses question little persons mothers to climb the inaccessible labor beds the  same way they did being  impregnated.

Others are the narrow neural lumber vertebrae colomn to accommodate the spine. This exerts pressure leading to complications in breathing, sitting, severe backache calling for operation which cannot be done in Uganda no Africa.

He faced a challenge when he took his girl for investigation at CORSU hospital, the doctor didn’t see anything, he recommended for another investigation after a year is when he put the girl on calcium tablets for 6 months.

But the deformity was increasing. No intervention was done to correct it. This is due to lack of specialty in managing the condition. 

He is calling for the ministry of health and other stakeholders to train specialized medical personnel to handle health cases of little persons