End skin cancer for people with albinism in Uganda

Since our last report and up to the end of the year, your donations and encouragement have enabled our partner SNUPA to step up its schedule of skin clinics, consultations, surgery and advocacy to help increasing numbers of people with albinism to prevent and recover from skin cancer.

You have supported seven further skin clinics to take place across south eastern Uganda, attended by up to 200 children and adults with albinism who received comprehensive skin checks with our dermatologist Dr. Ngobi, along with sunscreen and lip protection to keep them safe from cancer. Donations received through GlobalGiving have also enabled us to procure 300 high quality wide-brimmed hats for distribution at our clinics – a vital tool in skin cancer prevention.

Our dermatologist has additionally been able to provide emergency consultations for 23 people with albinism in his surgery in Jinja. Some of these individuals required minor operations to remove small lesions which were quickly undertaken by Dr. Ngobi - stopping skin cancer in its tracks.

It’s wonderful to be able to report that in the latter half of 2022 your support has contributed to nine more life-saving skin cancer operations for people with albinism. The most recent of these was for 24-year old single parent William. His surgery took place just before Christmas on 22^nd December. What joy and relief for him and his young children that they can begin 2023 with new hope and a more secure future!

Thank you so much for your generous support and interest in our work to end skin cancer among people with albinism in Uganda. We look forward to updating you further as this life-saving work grows in 2023 and in the meantime wish you good health and happiness in the coming New Year.

April to June 2022 was a busy quarter for the SNUPA team. With your help they undertook further skin clinics, skin cancer treatment and national campaigning for access to healthcare and skin cancer prevention for people with albinism.

25 children and adults with albinism attended April’s skin clinic in the district of Pallisa. Many had small pre-cancerous lesions needing swift attention and 16 people received cryotherapy from our dermatologist Dr. Ngobi. All attendees received new stocks of sunscreen and wide-brimmed hats along with healthcare training about how to keep themselves safe from skin cancer.

In June, a young man called John travelled across Uganda to seek help from SNUPA because of extensive skin cancer around his neck and throat. Without urgent treatment John’s prognosis was very poor. Your donations helped ensure that he swiftly received an operation and follow-up care to save his life. John has since recovered, is doing well and says that members of the SNUPA team have become his new family.

On 13^th June 2022 SNUPA commemorated International Albinism Awareness Day (IAAD) in Jinja by holding a campaigning march through the city, a large skin clinic, distribution of skin cancer prevention resources and enabling survivors of skin cancer to share their stories and lobby for improved healthcare. Your support helped ensure the day was an immense success: more than 700 people with albinism took part in the march, 289 people with albinism received skin checks with 117 receiving cryotherapy. 549 people received sunscreen and wide-brimmed hats.    

In our last report we mentioned single mother Annette whom you supported with an operation to remove severe skin cancer around her ear. She joyfully took to the podium during the IAAD commemoration to share her story. She told the attendees “I am so excited seeing all these persons with albinism. It has been my first time to march with my colleagues. It’s the best thing I have seen in life. I thank SNUPA for looking out for me… I was having sleepless nights battling the cancer. The care and the sunscreen lotions have greatly improved my skin.”

Annette, other skin cancer survivors and SNUPA’s Chairperson Paul Sezibwa called on the Ugandan government “to include sunscreen lotions among the Ministry of Health minimum health care package to be distributed free of charge to all health centers in Uganda to ensure accessibility for all persons with albinism.” They also called for an “increase in the number of dermatologists in government hospitals to complement the work of SNUPA in the fight against skin cancer.”

Thanks to your help we’re making steady progress in saving lives and reducing skin cancer among people with albinism in Uganda. However, there is still much to be done. Widespread droughts and rocketing food and fuel costs are exacerbating the extreme hardship and poverty faced by marginalised families in the wake of the COVID-19 pandemic. People with albinism struggle to meet their basic needs - including affording the modest costs of public transport to receive skin checks and ensure we can intervene early to prevent the spread of skin cancer. Your support and encouragement are needed and appreciated more than ever – thank you!

Thanks to your generous support we have provided four skin clinics from January to March 2022 in the eastern Ugandan districts of Budaka, Bugweri, Butaleja and Kibuuku. During these clinics, just under 100 children and adults with albinism received thorough skin checks from our dermatologist Dr. Ngobi. Many people with moderate skin damage received cryotherapy to remove pre-cancerous lesions. Every person attending received three months’ supply of high sun protection factor sunscreen, a tube of lip protector and a wide-brimmed hat. These hats provide excellent protection for the face, ears and neck and also give much-needed shade for people’s eyes which are highly vulnerable to the sun’s UV rays. With your support we were also able to purchase a further 400 wide-brimmed hats for distribution at our clinics.

As mentioned in our previous report, when people with albinism attending our clinics have extensive skin cancer which cannot be treated with cryotherapy or minor surgical procedures, we do our best to provide the operations and follow-up treatment needed. Thanks to you we have been able to provide skin cancer surgery for two single mothers this quarter – Annette, a widow with six children, and Rose, a young woman with three children. Not only has this surgery saved these women’s lives, but it has also protected their nine children from a sad, uncertain future without them. We will ensure that Annette and Rose continue to receive high quality sunscreen and skin checks so that they remain cancer free.

While the incidence and severity of skin cancer among people with albinism is steadily reducing through our regular provision of sun protective resources, unfortunately further attendees with life-threatening cancer were identified during these clinics, including Gabriel, a 32-year old father of two.

We hope these reports are offering a glimpse into how your support is transforming the lives and prospects of people with albinism and their families in eastern Uganda. If you would like to donate to this work further, please note that from 2pm BST on 20^th July 2022, GlobalGiving’s Bonus Day will offer matching funds of between 30-50% for donations of $100 USD (about £82) and upwards. Together we can end skin cancer among people with albinism in Uganda.

Your generous donations through GlobalGiving are enabling Advantage Africa and our partner, the Source of the Nile Union of Persons with Albinism (SNUPA), to reach people with albinism in parts of Uganda where they’ve previously had no, or very limited, support to stay safe from skin cancer.

From October to December 2021, you enabled us to provide skin clinics in four eastern Ugandan districts to help 88 children and adults with albinism to protect themselves. Each person attending these clinics received a comprehensive skin check, provided by our dermatologist Dr. Ngobi, along with cryotherapy if needed to remove small pre-cancerous lesions. Many people had extensive damage to their skin and 56 per cent required cryotherapy. Following their check, each attendee received three months’ supply of high sun protection factor (SPF) sunscreen and a wide-brimmed hat. Your support enabled us to purchase 300 high quality wide-brimmed hats for distribution at these and future clinics.

When attendees at our clinics are identified with extensive skin cancer, we aim to support them as quickly as possible with surgery and follow-up care. With your help this quarter, we’ve been able to provide five young people with albinism (three women and two men) with urgent skin cancer surgery to save their lives.  

In line with our long-term aim of influencing local and national government policy, SNUPA precedes each skin clinic with a visit to the respective district authorities to explain the skincare needs of people with albinism, share powerful evidence and demonstrate how we can all work together towards a 'skin cancer free generation' in Uganda. For example, before the Butalejja District clinic supported through GlobalGiving, SNUPA’s Director Peter met with the area’s Chief Administrative Officer. This led to Butalejja’s local government chairperson hosting a radio talk show to encourage people with albinism to attend the clinic and care for their skin.  

As well as preventing and treating skin cancer, these clinics also help us to identify and offer practical support to people with albinism and their families facing extreme difficulties in meeting their basic needs. The privations of the extended COVID-19 lockdowns throughout 2021 have caused severe and ongoing challenges for the most marginalised families.

Thank you so much for partnering with us in this life-saving work which is bringing us ever closer to ending skin cancer for people with albinism in Uganda.