TO MARK World Sickle Cell Awareness Day a new animation has been launched which aims to raise awareness about painful erections some teenagers and men with sickle cell may suffer from.

Priapism is a common issue for young men with sickle cell and these are long lasting painful erections which, if left untreated, can permanently damage erectile tissue. 

The condition can affect up to 50% of men, but unsurprisingly, it is not openly spoken about – but the new animation is hoping to change that.  

Speaking to The Voice, Dr Rachel Kesse-Adu, consultant haematologist, Guy’s and St Thomas’ NHS Foundation Trust, said: “With boys they can get a priapism which is essentially a painful erection of the penis.

“Sickle priapism happens because blood flow doesn’t pass through the penis as it should normally and sometimes you can get blood that is trapped that doesn’t carry oxygen.”

The new animation has launched on World Sickle Cell Awareness Day (Monday 19 June), and was developed when Boston Scientific partnered with the Sickle Cell Society and Guy & St Thomas’ Hospital to create the educational video.

The animation explores the symptoms, guidance on going to hospital, and other resources such as infographics.

It tells the story of Leon, a 13-year-old with sickle cell disease who recovers from a sudden and painful penile erection after his mother acts promptly, taking him to the Emergency Department (A&E).

Dr Rachel urged teenage boys and men experiencing the complication not to be embarrassed, but seek urgent medical attention as it can damage erectile tissue if not treated prompt.

The consultant haematologist, wants conversations around priapism to be more open and honest, so the community can easily recognise the symptoms and seek medical assistance.

But also, Dr Rachel believes the more it is spoken about, the more it will help combat any stigma associated with the condition.

She added: “In our experience we think at least 50 per cent of our male patients would have had at least one episode of priapism.

“The ones that are having priapism for half an hour, an hour, most early mornings and it keeps happening is a concern.

“There can be short episodes that resolve themselves, but a priapism that lasts beyond four hours is a big worry.”

She continued: “Beyond four hours that is when we worry because that is when they start killing off penile tissue and they could potentially end up with erectile problems in the future.

“Beyond 12 hours, a good proportion of them will not get a normal erection, beyond 24 hours it is highly unlikely and beyond 36 and 72 hours you are probably not going to get a normal penile function back.”

Dr Rachel said more work is needed to help normalise the conversation across the board with patients, carers and medical professionals.

She said other barriers which might stop teenagers and men from coming forward, is the possibility of having a largely female medical team at hospital.

She said she hopes the new animation will make boys and men with sickle cell aware of the complication and that it is “accessible” and can be shared around the world to help educate at risk communities.

Dr Rachel said that the warning signs of a priapism should not be confused with a “normal and expected” morning erection.

She said: “It should not be painful, it should resolve when you go to the toilet to urinate or when you walk around.

“Boys and men with sickle cell are expected to have normal morning erections.

“What is abnormal, is if that erection is painful, even if it resolves in 10 15, 20 or 30 minutes you should still tell your medical team.”

She added that painful erections that only last a few minutes could be a warning sign that you could be at risk of permanent erectile damage and stressed to seek prompt treatment.

Last year, it was announced that sickle cell is now the fastest growing genetic condition in the UK.

The disease causes red blood cells to form into sickle or crescent shapes and become stuck in blood vessels – which causes an agonising crisis episodes, and serious or even fatal long term complications including organ damage and strokes.

Many patients need regular blood transfusions to stay alive.

The animation on priapism can be viewed here: New animation raises awareness of painful erections in teens with sickle cell disease | Guy’s and St Thomas’ NHS Foundation Trust (guysandstthomas.nhs.uk)