Thread by @AdeolaMilan

Sickle cell was discovered over 100 years ago and receives little research, funding and attention.

Sickle cell disease primarily affects those of African and Caribbean descent but the trait has also been found in those with Middle Eastern, Indian, Latin American, American Indian, and Mediterranean heritage.

So it goes to show why they really do not care

There are 5 variations of the disease that I am aware of HbAS, HbSS, HbSC, Sickle cell-hemoglobin E disease & Hemoglobin S-beta-thalassemia.
All forms of sickle cell disease can exhibit the complications associated with the disease but HbSS is the most common & most severe.

Anemia is the most common symptom of all the sickle cell diseases. Because of the lack of oxygen to the red blood cells the body subsequently becomes dehydrated or develops a fever.

Severe anemia can make the individual pale and tired, and makes the bodies ability to carry oxygen to the tissues more difficult. Healing and normal growth and development may be delayed because of chronic anemia.

Another major symptom is pain crisis, or sickle crisis. This occurs when the flow of blood is blocked to an area because the sickled cells have become stuck in the blood vessel. These are also called vaso-occlusive crises.

The pain can occur anywhere, but most often occurs in the chest, arms, and legs. Any interruption in blood flow to the body can result in pain, swelling, and possible death of the surrounding tissue not receiving adequate blood and oxygen.

Another symptom is Acute chest syndrome. This occurs when sickling is in the chest. This can be a life-threatening complication of sickle cell disease. It often occurs suddenly, when the body is under stress from infection, fever, or dehydration.

The sickled cells stick together and block the flow of oxygen in the tiny vessels in the lungs. It resembles pneumonia and can include fever, pain, and a violent cough. Multiple episodes of acute chest syndrome can cause permanent lung damage.

Another symptom is Stroke. This is another sudden and severe complication of people with sickle cell disease. The misshapen cells can block the major blood vessels that supply the brain with oxygen.

Any interruption in the flow of blood and oxygen to the brain can result in devastating neurological impairment. Having had one stroke from sickle cell anemia, the individual is more likely to have a second and third stroke

Jaundice is another common sign and symptom of sickle cell disease. yellowing of the skin, eyes, and oral mucosa. Sickle cells do not live as long as normal red blood cells and, therefore, they are dying more rapidly than the liver can filter them out.

Bilirubin (which causes the yellow color) from these broken down cells builds up in the system causing jaundice.

Priapism is another symptom experienced by males with sickle cell disease. An obstruction of the penis by sickle cells. If not promptly treated, it can result in impotence.

Another symptom sickle cell patients can experience is Splenic sequestration (pooling). Crises are a result of sickle cells pooling in the spleen. This can cause a sudden drop in hemoglobin and can be life-threatening if not treated promptly.

The spleen can also become enlarged and painful from the increase in blood volume. After repeated episodes of splenic sequestration, the spleen becomes scarred, and permanently damaged.

The risk of infection is a major concern for people without a functioning spleen. Infection can be the cause of death for people suffering with sickle cell.

Any and all major organs are affected by sickle cell disease. The liver, heart, kidneys, gallbladder, eyes, bones, and joints can suffer damage from the abnormal function of the sickle cells and their inability to flow through the small blood vessels correctly.

Problems associated with sickle cell disease may include Increased infections, Leg ulcers, Bone damage, Early gallstones, Kidney damage and loss of body water in the urine and Eye damage.

Treatment options for sickle cell include, Pain medications such as paractamol, ibuprofen, dihydrocodine, morphine & oxycodone etc.(for sickle cell crises & chronic pain)

Blood transfusions (for anemia, and to prevent stroke; transfusions are also used to dilute the HbS with normal hemoglobin to treat chronic pain, acute chest syndrome, splenic sequestration, and other emergencies)

Penicillin (to prevent infections)

Folic acid (to help prevent severe anemia)

Hydroxyurea a chemotherapy drug (A medication recently found to help reduce the frequency of pain crises and acute chest syndrome; it may also help decrease the need for frequent blood transfusions. The long-term effects of the medication are unknown.)

Doctor and nurses don’t advice people to touch the drug hydroxyurea but they expect us to digest it into out bodies. Woman also have to be on contraception as it can harm our babies and Men have to freeze their sperm because it lowers their sperm count.

Bone marrow transplant (Transplants have been effective in curing or reducing symptoms in people with sickle cell disease; the decision to undergo this procedure is based on the severity of the disease and the availability of a suitable bone marrow donor.

The life expectancy has increased over the past 30 years and many individuals suffering with sickle cell disease can now live into their mid-40s and beyond BUT people are still dying prematurely because of the lack of seriousness the condition recieves.

Sickle cell is not taught to nurses and doctors whilst they’re studying for their qualifications. I’ve met doctor and nurse who don’t know what sickle cell is!

And when it comes to sickle cell time is everything when treating some of the complications that occur with the disease .

I hope i’ve helped people get an insight into what sickle cell is. I hope to raise awareness and help educate people about the disease. - In the mean time follow my IG: Thesickleconnect it’s not much but slowly & surely i will get there! ❤️

I’m trying I came out of hospital 2 days ago after receiving the WORST care ever!

This information is not my own I just used it and tweaked it based on what I personally know to inform you guys.

As people of colour we need to talk about it more!

And people like me who suffer from it must speak up! Please report any ill treatment you experience when receiving care!

Those that live in London make a formal report to PALS, report concerns to the regulatory body, the General Medical Council or/and report concerns to other bodies such as the Care Quality Commission, the CCG, your local Healthwatch, the press, or the NHS Choices website.

And I think its best we start writing everyone involved in our care whilst admitted names down from doctors to nurses, who looked after us on what day, the times we receive our medication, the ward we are admitted to! Literally EVERYTHING!!!!

I know we shouldn’t have to but we need to at this rate!

And everyone replying because it only affects people of colour, black people etc.. what are WE going to do about it? Keep on boycotting brands like gucci and making big fusses about stupid shit or actually speak up and make big fusses about the REAL issues that affect our people!

“Because it’s black people” is the most common answer i’ve seen to this thread.

Can we stop expecting anyone to help us if we can’t help ourselves! It’s mostly common in Nigeria and Ghana and do the government and people on top even care! I live in London, UK and the treatment is so imagine Africa!

When people are suffering with complications due to sickle cell some don’t even have money for health care let alone access to healthcare.

Imagine having complications in the night and no ambulance or transport to take you to the hospital! Their condition worsens severely and many people die

There is alot to me done all over IMO!

If i have said anything incorrect please correct be and don’t come with your stupidness. We need education not ignorance. Much love ❤️

Please help me support my girl @JennaNDavis_ she will be
partaking in this year’s London Marathon to raise money for African Caribbean Leukaemia Trust (ACLT) and Sickle Cell Society (SCS). uk.virginmoneygiving.com/fundraiser-por…

Being aware it exists doesn’t mean people have been taught what it is.. Glad to have learned more healthcare staff are learning about it. This is a new age and I’m thankful this new generation of many future doctors and nurses will know and be taught about sickle cell.

People just can’t comprehend that some doctors and nurses do not know what it is. Talking from experience here and other warriors have co-signed this. Don’t shoot the messenger abeg

Listen i’m admitted to Heamotology/Oncology ward where nurses have no training about sickle cell! I was told by a black nurse that she was ignorant toward sickle cell until her colleague gave her an insight into the disease because she lost her son to it!

Training days about sickle cell used to be optional for the staff. I’ve spoken at one.. it’s only on my latest admission I was told that the matrons for the Hematology/Oncology ward are now going to make it mandatory that all their nurses attend the training days..

Whilst in university outside London i’ve met doctors who didn’t know what it is or didn’t know how to treat me and this has been the same experience for other warriors.

SOME doctors & nurses do not know what sickle cell is and thats the damn truth. You can’t disregard what sickle cell warriors are saying as we are the one that go through it! - if you got a problem with any of my tweets take it up with your maker abeg

More education and less ignorance please. ❤️