Irish GP surgery helping people with albinism in Malawi

Irish GP surgery helping people with albinism in Malawi

Dr Mark Wheeler working in one of the clinics in Malawi, training a local dermatology officer, Sphiwe Mankhwala. Picture: Harry Freeland.

An Irish GP surgery is helping people with albinism in Malawi, as they face not only health issues but are also in danger of being kidnapped and murdered for their body parts.

Dr Mark Wheeler, of Edenpark GP surgery in Raheny in Dublin, works with people who have albinism in Malawi. The GP, along with his wife, set up a skin cancer prevention programme back in 2016. They were also aided by local campaigners and clinicians.

People with albinism who live in Sub-Saharan Africa face numerous issues. They have little to no pigmentation or melanin in their skin, which means they are at increased risk of sunburn, sun damage and skin cancer.

They are alsoat risk of getting kidnapped and being murdered, due to locally held beliefs that their body parts can be used in potions and charms by witch doctors.

Dr Wheeler says one of the people who attended the skin cancer prevention clinic for years was recently murdered and dismembered.

"He was abducted, and his torso was found dumped in a field and his other body parts were later recovered. 

He had been completely dismembered. A week later there was an attempted abduction of a 12-year-old girl who also attended our programme.

"The perpetrators are local people generally, they are very poor people who are being offered a lot of money to do something like this."

Initially, the skin cancer prevention project started when Dr Wheeler took a sabbatical. "I always wanted to go back to Africa where I was as a student. In 2013, I worked with an inspiring woman called Mags O'Riordan, who runs a primary care project on Lake Malawi."

Dr Wheeler worked there for six months. His wife and GP practice manager, Carol, came with him, and she taught in the secondary school there. His daughter Molly, who was in TY at the time, worked in a preschool and taught computers to secondary school students.

"It was during this time I encountered a lot of people with albinism and became aware of their problems."

Dr Wheeler has a special interest in dermatology, and he says many people with albinism living in Malawi can have severe sunburn, as well as painful lips and eyes. "I was seeing people in their teens who had the sun damage of a 70-year-old Irish person."

This chronic sun damage can lead to skin cancer, so needs to be caught early.

Dr Wheeler then met Bonface Massah, the head of the Albino Association of Malawi. "He was sitting outside my surgery because he heard I had become interested in helping people with albinism."

Dr Wheeler then contacted Dr Kelvin Mponda, who is one of only two dermatologists in Malawi. The country has a population of 70 million people.

Dr Mponda and Dr Wheeler spoke about setting up a skin cancer prevention clinic in the area.

They then realised that Standing Voice, a London-based NGO, has a similar project running in Tanzania. Dr Wheeler partnered with them in 2016, allowing the project to expand into Malawi.

ESTHER Ireland funded the project, as did Standing Voice. This money, combined with private funding from friends, got the skin clinic up and running.

"We focus on skin cancer prevention and treatment, as well as advocacy and awareness. We started off in one region, now we are in six," says Dr Wheeler.

"We have 600 people on the programme. We work closely with the Department of Health, both locally and nationally. 

It's not an NGO coming in and telling people what to do. We collaborate with Malawian clinicians, clinical officers, and we use health board facilities.

In Malawi, the majority of healthcare is delivered by clinical officers, and a dermatology course was devised for these clinicians so they can keep the programme going. The clinics are advertised locally, and people can sign up to attend. 

Pre-cancerous conditions are treated with cryotherapy. If surgery is needed, Dr Wheeler and other clinicians can use a minor operating theatre in a local hospital to form biopsies and excisions on small cancers.

"Unfortunately a lot of people present too late. They might be embarrassed or afraid to come forward. It might not be able to be treated by us, and they can be sent for chemotherapy, which doesn't work, and they die," says Dr Wheeler.

"We have also set up a palliative care programme. 

The tragedy is these people are only in their 20s and 30s, they have dependents, mothers, fathers and children. It is pretty shocking.

As part of the programme, Bonface Massah, who is also now the programme's in-country director, gives an educational talk about albinism, and how the condition affects people. "Oftentimes women who give birth to children with albinism are deserted by their husbands. Women who have albinism can be at risk of sexual assault, and people with albinism in general are at risk of being kidnapped and killed," says Dr Wheeler.

He adds that education is the only way to change deep-seated cultural beliefs. "It won't happen quickly. In Tanzania, Standing Voice do a lot of plays and education. There is one video where a person with albinism is standing alone, and they say 'I am a human being, come and touch me, I am not magic and I feel pain, I have children'."

Dr Wheeler adds that it is important to be culturally sensitive. "We have had enough of white people telling African people what to do, we have to be conscious of their culture."

Dr Wheeler says he and his wife Carol always wanted to make themselves redundant, meaning the clinic would become self-sufficient and be entirely staffed by local people.

Usually, the couple would take annual leave and go to Malawi every March and October, but couldn't last year because of Covid. "The Malawi team, under the direction of Dr Mponda and Bonface, were able to continue the programme," says Dr Wheeler.

Originally it was envisaged that the programme would register as a charity in Ireland, but this couldn't happen because of Covid. He is hopeful that Irish people will donate to Standing Voice in the UK instead, to keep their current programmes running, as well as aiding them with expansion.

He adds that unfortunately, the Irish government doesn't normally fund healthcare projects in Malawi, so Dr Wheeler is hopeful Irish aid funds can be diverted to education instead, to stop people from being killed.

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