End skin cancer for people with albinism in Uganda

Over the past quarter your donations through GlobalGiving have made an immense difference to the lives and prospects of people with albinism in Uganda. Your support has contributed to skin clinics, life-saving skin cancer operations and provision of resources to help people protect their skin.

During one of the skin clinics directly supported by your donations, the SNUPA team reported ‘The skin cancer prevention project continuously restores hope to many persons with albinism and their families. It also builds community awareness and positions persons with albinism to take part in community activities through their increased self-confidence.’

On June 13th we held our annual commemoration of International Albinism Awareness Day (IAAD) in Jinja, which enabled 700 children and adults with albinism, plus families, advocates and local and national leaders to come together to raise awareness of the challenges faced by people living with the condition. A lively march through the city was followed by a campaigning event alongside which we held a large skin clinic and distributed protective resources including sunscreen, wide-brimmed hats and long-sleeved clothing. Thanks to your support we were able to provide 175 people with albinism with long-sleeved shirts to help them stay safe from the sun.

Your donations have also contributed to urgently needed skin cancer surgery for six young people with albinism. All had fast-growing, life-threatening skin cancer and your support has completely transformed their circumstances from utter despair to hope that they can now lead full and healthy lives. The people who received treatment included a young woman called Robinah. Before travelling across Uganda to attend the clinic at our International Albinism Awareness Day commemoration mentioned above, she had never previously had access to sunscreen or skin checks. Thanks to your support we were able to quickly arrange treatment for the large cancerous lesions on her neck and chest and she is now making a good recovery.

At another of our skin clinics, the mother of 14-year old Ludra told us ‘Ludra's skin was affected due to the long distances he moves to access school. I’m worried that if his skin is not attended to, he may lose his life. Please help my boy.’ Thanks to you we were indeed able to help Ludra have an urgent operation to remove the cancerous and growing lesion on his head. He is now back at school with new-found confidence and keeping safe with protective clothing and a regular supply of sunscreen.

While our key focus is on skin cancer prevention, and this is significantly reducing the incidence of skin cancer cases recorded at our clinics, there is still great need among people with albinism who have never before accessed such services, as in the case of Robinah, and are now urgently seeking help. This includes Kintu, a 37-year old single mother of three children. She recently attended one of our clinics in Pallisa district for the first time and the SNUPA team has alerted us to the need for urgent surgery to address the spreading skin cancer on her face. The team told us that Kintu was very discouraged, ‘According to her, she had no hope of getting any help from anywhere’, and she has agreed to share her photo.

Please continue to support our work and help end skin cancer among people with albinism in Uganda. It would be wonderful if you would also share these stories and needs with family, friends and colleagues who may be interested. You are making a world of difference - helping to save lives, preventing children from being orphaned, giving students the confidence to return to school and restoring hope in families and communities. Thank you!

So far, 2023 is proving as busy as ever in our work with SNUPA to help people with albinism to keep themselves safe from skin cancer. Your donations have directly supported three district skin clinics in the far south-east of Uganda in this first quarter, enabling 47 people with albinism to have skin checks, receive cryotherapy if required and sun protective resources including sunscreen and wide-brimmed hats.

The clinics were conducted in local health centres in order to bring the skin care challenges faced by people with albinism to the attention of the respective district health workers. As ever during the skin clinics, the SNUPA team ensured that local government authorities were also invited so that they could better understand the challenges facing people with albinism and help promote long-term change.

Unfortunately, recent attendance at our skin clinics has been diminishing. Prolonged droughts, global instability and inflation means that vulnerable families, including those affected by albinism, are facing extreme poverty and struggling to meet their daily needs. Minimal as it is, many people with albinism simply can’t afford the cost of public transport to reach our clinics. This is of huge concern as it puts their very lives at risk and, while we’re aiming to undertake home visits to those most in need when necessary, this is not sustainable.Therefore, we’re starting to help families affected by albinism to undertake small enterprises to improve their self-reliance to meet their basic needs, such as transport costs for health checks. Your ongoing support for our skin cancer prevention services is vital - it means we can seek and allocate other resources to ensure people are in a position to receive them!

This month, your donations have also contributed to life-saving surgery for three young men with albinism. This includes 17-year old Brian who had never had any sunscreen and didn’t know how to protect his skin before recently meeting members of the SNUPA team. Brian had dropped out of school and was in despair because of the painful and fast-growing skin cancer on his head. When his surgery and reviews are complete he will be able to get back to school and look forward to a full life ahead of him, equipped with knowledge about keeping his skin safe and supported with regular checks and sunscreen.

The SNUPA team brings hope and friendship not just to people with albinism but also to their whole families. Your support and encouragement helps them daily as they welcome new visitors, often from distant parts of Uganda, to their office and provide advice and fellowship, along with sun protective resources. Thank you so much for partnering with us in this life-changing work!

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.