As we start the new year we renew our appeal for unwanted bras for donating to single mothers of disabled children in Sierra Leone to generate essential income. Bras are not made locally in Sierra Leone and they have a good resale value. Poor communities are being hard hit by the financial crisis as basic food costs escalate. We are supporting an initial group of 10 women to attain a reasonable income to support their disabled child and other family members. The women attend the support groups of the health and disability organisations with whom we work.

You can post bras to our address at 31 Grove Hill, Reading RG4 8PN or contact us to see if we can arrange a collection. We are grateful for your support.

Our work with the Sierra Leone Association of People With Albinism has gone from strength to strength, with support for a small staff team and outreach sessions across the country to distribute sunscreen and to raise awareness of the issues affecting People With Albinism.

In November MASL trustees undertook a project visit to Sierra Leone, visiting Bo, Port Loko, Freetown and Njala. In Bo we attended one of the project’s ‘Living Safely With Albinism’ forums where SLAPWA distributes Altruist Sunscreen and donated protective items such as hats and sunglasses. These are rare opportunities for the community to come together and are essential for reducing isolation and gaining practical and emotional support from peers and from the Association.

Cases of COVID-19 continue to rise in Sierra Leone, affecting all areas of life. The Government declared a 12 month state of public health emergency and a ban on gatherings has been introduced; there has been one short lockdown and there are now discussions about holding a longer lockdown. Our partners on the epilepsy programme have stopped holding group epilepsy awareness-raising events and have been contributing towards raising awareness of COVID-19 and preventing transmission. Using megaphones and keeping a safe distance, the Epilepsy Support Workers are supporting the efforts of District Health Management Teams across the country.

Apart from the lack of ventilators in Sierra Leone, there are chronic shortages of much more basic supplies needed to slow the spread of the disease and treat people with the virus eg masks, oxygen and, even more fundamentally, soap and water. If you would like to support our efforts to purchase and ship certified visors to health workers, community workers and disabled people’s organisations in Sierra Leone, please consider making a donation here.

https://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1000266

*A Christmas idea that helps to save lives: buy 3 months supply of sun cream for a Person With Albinism in Sierra Leone*.
Persons With Albinism are at extreme risk of skin cancer, with an estimated 80% of people dying early from this condition. We have been supporting some people this year to access surgery for skin cancer as well as providing prescribed cream which removes pre-cancerous cells.
Preventing sun damage from occurring is very difficult in Sierra Leone. Protective sun cream is expensive and out of reach of most people (costing between £10-£15 a bottle locally; the average primary school salary is £40). Poverty is a determining factor on how much flexibility people have to avoid the sun. In the rural areas most people are subsistence farmers. Protection from the sun saves lives and needs to start from an early age. We have shipped two consignments of award-winning Aldi sun cream to Sierra Leone this year and need to maintain this supply. Can you help us by buying a small amount as a gift, postage free, and arranging for it to be sent to our registered office: MASL, 31 Grove Hill, Reading RG4 8PN. We will arrange shipment to Sierra Leone and the Sierra Leone Association of Persons With Albinism will distribute to members. Donations of any size are welcome and appreciated and can also be left in a box on the doorstep at this address.

Over 200 patients and their families – in Bo, Kabala and Freetown – participated in our lively interactive sessions run by MASL Trustee and Epilepsy Nurse Tolu Olaniyan during SUDEP week, October 2019. There was plenty of time to ask questions, clarify uncertainties, talk about medication side-effects, and seek support on the social aspects of the condition. There were opportunities for the men and the women attendees to have separate discussions. Epilepsy is affected by so many factors – diet, sleep, activity levels, pregnancy, puberty, etc – and patients benefited enormously from exploring in further detail how they can minimise the risks associated with the condition.

The Sierra Leone Association for Persons With Albinism (SLAPWA) attended our training around public health, stigma and witchcraft abuse earlier in the year. The Association seeks to address many of the themes that we see in the epilepsy project work, especially around the lack of local health care provision to support the specific needs of the community and the stigma that surrounds the condition. Key health care challenges are: managing the high skin cancer risk (estimates suggest that 80% of the Albinism community in Sierra Leone will die early from skin cancer) and support for eye care. Protective sun cream is expensive in Sierra Leone and out of reach of most people. We arrange purchase and shipment of sun cream to Sierra Leone and have arranged urgent treatment with visiting surgeons for patients with Albinism. We would welcome contacts with companies that may be able to donate Factor 50 sun cream, blocking both UVB and UVA, as well as offers of protective clothing and hats which we can ship to the Association for distribution to members. Protection from the sun saves lives and needs to start from an early age.

We will mark our 15th year of operation in 2019. We are planning some activities to mark the occasion and some dedicated supporters have offered to do some challenges! If you can help us to mark this milestone and support more people to access vital epilepsy medication, do get in touch. A cake sale, a half-marathon, a dinner party or BBQ – it does not have to be a huge event. Most of our epilepsy medication can be made available for around £20 a year. Medication transforms lives and there are still an estimated 90,000 people without access to epilepsy drugs in Sierra Leone. Can you help us to support more people this year?

Our workshop on ‘Beyond Safeguarding: Harmful Beliefs and Public Health’ at The British Council, Freetown, on 24 June, was attended by staff from the Epilepsy Association, the Sierra Leone Autistic Society and the Sierra Leone Association for Persons with Albinism.

Witchcraft accusations are an almost universal experience for our epilepsy patients who attend clinic, and often for their families too. The UN is planning a special resolution acknowledging the severity of human rights abuses that take place due to beliefs in witchcraft, calling for urgent action.

MASL Trustee Leethen Bartholomew ran a workshop for 30 attendees on understanding and meeting the needs of those accused of witchcraft/spiritual possession and looking at how we can further safeguard people from harm, especially children, in our support work. There were many shared experiences amongst the participating organisations, including the pervading impact of stigma which leads to the direct denial of human rights for those affected. We look forward to continuing to work with all organisations on this important issue. We are grateful to The British Council for the use of their seminar room.

MASL provides all the medication for the epilepsy project – 5 types of medication to treat various epilepsies – purchased and shipped from the UK. This costs around £15,000 annually.

Please help us mark International Epilepsy Awareness Day on 12 February by supporting our medication bill. For 70% of patients, this treatment completely stops seizures and other forms of epilepsy; for 20-25% it will mean reduced seizures/absences/other manifestations of epilepsy. Uncontrolled epilepsy directly affects health and social and economic capacity – preventing participation in education, in employment and forcing individuals and families into poverty.

Our Chair of Trustees has set up a page on Virgin Money Giving. Please consider supporting the costs of this life-transforming medication.

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=SarahSnowMASL&pageUrl=3

Medical Assistance Sierra Leone and the Epilepsy Association of Sierra Leone (EASL) were pleased to participate in the first autism conference in the country in Dec 2017. Around 25% of people with autism also have epilepsy – we are not seeing these numbers at clinic and the Epilepsy Association were there in full to learn how autistic people and their families may be better supported to come forward and access medical services.

The Pan-African Experiences of Autism: Transforming Rights Into Reality Conference took place at The British Council in Freetown on 4 & 5 December 2017 and was extremely well attended, with participation from parents, carers, teachers, NGOs, health workers and Ministry officials. The event marked the International Day of Persons With Disabilities and staff have already identified children with autism in the community in need of support as a result of detailed information, along with insightful film case studies,  provided at the conference.