Nobody should carry sickle cell alone.
Daisy Foundation is a community for Ugandans living with sickle cell disease, and for the parents, partners and siblings who care for them. We share what we know, we check on each other, and we make the practical parts of this illness less frightening.
What we do
We answer questions honestly
Most families are handed a diagnosis and very little else. We explain what sickle cell is, what a crisis looks like, and what care actually costs, in plain language.
We connect people to each other
A parent whose child was diagnosed last week can talk to a parent who has done this for ten years. That conversation is the most useful thing we can offer.
We push for testing
Knowing your status before you have children changes outcomes. We run screening drives and talk to schools, churches and mosques about why it matters.
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If someone is in a pain crisis
- Give fluids. Water, plenty of it, and keep giving it. Dehydration makes a crisis worse and prolongs it.
- Keep them warm. Cold and sudden temperature changes trigger and worsen crises.
- Give the pain medicine you were prescribed, at the dose your clinician gave you. Do not wait to see whether it passes.
- Rest, and no exertion.
- Go to hospital now if there is fever, chest pain, difficulty breathing, a swollen belly, sudden weakness on one side, a change in vision, a painful erection lasting more than two hours, or pain that your usual medicine is not touching.
Fever in a person with sickle cell is an emergency, not a wait-and-see. Infection can move very fast. Read the full guide
Why Uganda
of Ugandans carry the sickle cell trait, according to the national Uganda Sickle Surveillance Study. Most of them do not know.
are born with sickle cell disease itself. The rate varies sharply by region, from roughly 4% trait in the south west to nearly 19% in the north.
babies are estimated to be born with sickle cell disease in Uganda every year. Many are never diagnosed.
Figures from the Uganda Sickle Surveillance Study, which analysed dried blood spots from roughly 97,000 infants across 112 districts between 2014 and 2015, published in The Lancet Global Health.
Help us keep this going
We are small and we are new. Money goes to screening drives, transport for families who cannot reach a clinic, and folic acid and antibiotics for members who cannot afford them. You can give by mobile money inside Uganda, or by card from anywhere.