Sickle cell can be cured in some cases if a right match blood donor is found using the cord blood saved after birth of a new baby from the donor. So it is important to bring awareness to suitable potential mothers to donate their cord blood cells or placenta to use in helping improve the health and lives of many suffering with pain. In addition, blood donors can help with bone marrow harvested from bone. This intervention is used for Sickle cell treatment currently explored as the new approach used in some countries with an available right medical care or resources. Treatment is labour of love by people willing to help relieve agonising pain. Intervention leads to cure as true story of Carol shared in her own words:
My name is Mirriam Carol Mulumba, but my friends call me Carol. I am the first born child to my parents Abudullah and Lucky, followed by my younger brother Mark and little sister Aliah. When I was just three weeks old, my parents were told that I had sickle cell disease. My mommy and dad cried because at one time in the past children with the disease rarely lived past their teens. I was very sick whenever I got ill I had to stay in hospital for weeks constantly had horrible pain. My head felt like someone kicked it, and my stomach felt like someone punched it, my foot felt like it was stuck under a rock and my heart felt like it was being squeezed. I spen, time in hospital on morphine drip, oxygen, folic acid, penicillin v, voltarol, blood transfusions, antibiotics. When I was 6, it got so bad the doctors said my only hope would be cord cell transplant. My parents decided to save my younger brother Mark’s cord cell blood and he happened to be a perfect match for me! I had to go through chemotherapy before receiving my brother’s bone marrow and the cord blood cord cells at Methodist Children’s Hospital for 21 days. The effects of chemotherapy were rough for me. I lost all of my hair, my face was swollen, had stomach problems bad mood swings caused by the side effects of medications. A month after transplant, test showed cured of sickle cell.
This type of intervention is first of all for chronic pain type of sickle cell and also requires finding the right blood donor matching the blood type of the person needing the transfusion. The donor blood is stored in freezer and saved for use at a later date. Sickle cell patient undergoes many days of chemotherapy reprogramming blood cells ready to receive donor blood stored earlier. In addition blood marrow is harvested from donor/s by extracting the bone marrow stored with cord blood for new procedure to exchange donor blood. Reason for this method of intervention is blood tissues break down from sickle cells build block veins in blood stream coagulate prevent blood flow circulation. Thickened blood gel unable to flow through body entirely drained for fresh blood. Untreated blood oxygen is limited cause stroke, saturated liver does not function properly.
So require Detoxifying coagulated blood from body as a result of the broken down blood cell accumulation blocking veins to cause intense joint pain. The patient’s blood flow become restricted so limited and given blood transfusions. Their eyes become yellow from jaundice due to the liver’s inability to function efficiently. A constant journey to hospital sometimes siblings in various wards simultaneously while trying to work and run the family. The stress and pressure are beyond any words of verbal expression to adequately describe these experiences. A family has to be strong for the sake of the children not to speak negatively around them to put fearbin them. One has to be strong and pray for the help of God if believer to endure and ensure well being and health of the primary carer. In addition, as the children with sickle grow they are always severely affected by school attendance or school work. My first awareness of sickle cell was so profound when my classmate did not turn up on the Monday morning in primary school. We asked our teacher about her absence and was told she died.
She was so healthy looking from from the outside and it was a shock she died at about 10 years old. Grace also had a twin brother in the same class with us who continued his education and is renowned global artist today. So his beautiful sister died early mostly due to a lack of proper understanding for treatment in the early years. Then another girl died next called Miriam in first year 7 Secondary School. This triggered the word “sickler” again in my mind as the memorial was held in the school. A few years later relived loss of my friends again when it seemed that sickle cell had unstoppable vengeance on mostly my friends and class mates. It was during A levels when my brother who lost his best friend in sixth form called Anson. The traumatic pain of loss on family and on my brother unbearable.
Each potential partner is a carrier of the gene so the children inherit the illness from birth. Some people do not realise how traumatic it is for the whole family to deal with Sickle cell. Usually there are no external features, body turning blue, blushing or the usual means used for an assessment of a patient. Meanwhile the chronic intense pain going through has effect on the patient perceived as not happy and bubbly. Constant daily pain management means they can be seen as moody. Furthermore they do not feel like talking about Sickle Cell pain all the time so may not share with everyone their health condition. As a result others may be even told but think they present to be unwell. Seeing them look healthy to people means they are not taken as seriously as other visual critical illnesses are treated. Therefore very frustrating in pain and misunderstood by some people. The family often has more than one who is unwell so multitasking to cope and as the chart shows have to live with these uncertainties for life. Loss of my friends stayed with me for so long yet sickle cell issues surfaced again as patients in day wards are being sent back to emergency wards with drips attached. I wondered why most hospitals seem helpless to save all these precious lives. Blood transfusion is urgent like a heart attack TIME IS OF THE ESSENCE EVERY SECOND COUNTS literary with Sickle Cell treatment. This because blood flow is blocked by Sickle cell moonlike shape reduces blood circulation oxygen flow cause breathing problems oxygen given immediately to Sickle cell patient.
Then again in First year university another beautiful girl called Peace was lost this time the daughter a pastor. It totally baffled me why God HIMSELF it seemed to me did not save her life. Final year again another girl Sophia died at the same university and we had to watch her boyfriend deal with loss at such a young age. Parents are hardworking and successful and could afford any medical care required at the university hospital yet she died too. A close relative Divina died too so this experience helped me become a friend to her best friend living next door to help support her with the bereavement while writing final exams. Somehow we sailed through thinking that sickle cell life practical experiences left behind for good forever. 3 years later met and married a wonderful spouse and started raising a family. Often romantic love and dating does not consider these genetic matters in those days. Too much in love to think of living without spouse focuses on wedding plans. It was during routine pregnancy checks for expectant women these sickle cell matters came up again. Choice is given for amniocentesis with the risk of loss due to a miscarriage or termination if preferred. Throughout pregnancy our whole world suddenly tumbling down by sickle cell test option. Seek counselling support and mentoring to help deal with these issues. The Sickle Cell illness can pull family together to become stronger to face the challenges. What did not kill you makes you stronger but some families so devastated by news blame each other and even divorce. At times mothers become the sole carer of the children abandoned by spouse who leaves because cannot handle pressure. It is necessary to seek help not to break down but be able to support the children as gifts from God to you. Everyday they are alive is another medical miracle you must be grateful and thankful for child.
Result showed full sickle cell but decided not to terminate because it did not make sense to prevent life before living. This is the personal challenge that brought us to learn more about sickle cell and how to better manage this illness. Years of these difficult times have brought great improvement in treatment of sickle cell so personal to our family. We have learnt a lot more about how to take better care of our lives in a healthy way to enhance our lives. Drinking water to Hydrate the body is essential to enable the blood flow circulation to carry oxygen to the body. Eating well and warmth is an important factor and family support plus joining a sickle cell care support centre Essential lifeline for all associated with sickle cell patients. ABOVE ALL CHECK THE BLOOD GROUP FIRST BEFORE DATING DECLARE TO PARTNER SO CHECKED TOO. IF YOU BOTH DECIDE TO GO AHEAD TO MARRY BE PREPARED TO HONOUR CHOICE TO BRING UP RAISE FAMILY WITH SICKLE CELL WITH LOVE. Embrace all children you are responsible for bringing into the world and take best care of your family. Sickle cell children have delayed growth spurt and puberty so sometimes smaller and thinner than than classmates. They can be picked on by some children so we bring awareness in schools to encourage hydration, rest, regular absences from school for hospital treatments, delayed academic work. Often sickle cell HIDDEN DISEASE IN BLOOD INSIDE THE BONES.
Some people look at patients who seem healthy but the next minute in hospital on admission. This unpredictable nature of the illness can affect parents raising a child fully devoted to caring for them. So the family can suffer financially by loss of income, career of parents. Children so often stay home longer due needing the help and support if family during illness especially demobilised during crises. We carry them literary as joint pains is too much to walk or function. And unable to work themselves regularly, this lack of income domino effect cycle, not earning enough sadly recurs in the family. The benefit system lumps them with others simply asking classic test assessment can you talk, can you eat by yourself, can you answer phone then well enough to work. The employers say they are not charities so have no special treatment for a staff always taking time off getting paid while hiring someone else to do the job. Some do not have long- term work with good renumeration due to health. They need medical care, family support to help supervise their treatment after hospital discharge. No community care nurses available for home treatment the family cares for them during the critical illness. Hourly medicines given at night by relatives so most live longer at home. But penalised by benefit system for not “falling out with family” before they are considered qualified for a financial help. Without jobs due to health or their work interrupted the self employed Sickle cell patient must pay back working tax credit for being ill unable to earn income. They are refused ESA because the authorities assume they are well to work so vicious cycle continues in pain without any food or heating. These issues are dealt with by the patient silently in pain, agony, tears, miss out on physical activities outdoors with peers due to isolation for hospital treatments and some Sickle cell patients faint at work for not eating for days.
These matters must be urgently clearly understood to stop the discriminations against sickle cell survivors. Sickle must not be victimised through racism by the treatment endured throughout years. As it is perceived as a black people’s illness often does not receive enough funding to help with the daily care and community support. Most people caring for a sickler depend on charity donations because of inability to work to earn to save enough or have contributions towards pensions. So they are often struggling with family health issues and financial needs. Many live on loans so in debt because not well enough to earn regular living. Employers great them as physically healthy able bodied lack understanding of the health issues associated with Sickle cell disease. The Sickle cell patients is affected so prone to illness so often sometimes for months on end. The policy makers must understand the vital help essential to support the survivors to thrive. Through no fault of their own are born with inherited disease society again Punishes them for. Discriminated against yet God created them so treat Sickle cell patients with dignity and respect. They did not go to supermarket to buy Sickle cell disease genes thrust on them so need support.
Hospitals lack adequate training and the proper resources for their UNIQUE type treatment essential for specially trained staff. Recently in UK ambulance service refused to take a woman in crises for not being in the usual form familiar with so refused to pick her to hospital. Assumed perhaps to be on drugs due to perceived state unfamiliar with she died during the crises stage. This is why we want people to become more aware and understand the nature and needs of sickle cell care. A beautiful Nigerian virgin woman lost her life a few months ago returning from the hospital during treatment. Someone saw her in her most vulnerable moment, and followed her raped her, killed her for her mobile phone. The family support system for sickle cell no matter how stressful or painful to put up with mood pains has to continue. NEVER MISTAKE CRISES PAIN AS TANTRUMS EMBRACE PATIENT BY LOVE AND ENCOURAGE THEM NO MATTER HOW IRRITTATING THEY SEEM SOME BADLY AFFECTED BY MORPHINES so their personality moods CHANGE. IMPORTANT TO KNOW SOME MEN ARE RELUCTANT TO SEEK QUICK MEDICAL HELP THINKING THEY ARE “WEAK” SO ‘TAKE PAIN’ UNTIL CRISES STAGE BEFORE SEEKING TREATMENT. Family has to be there to encourage all to seek help, eat well, rest and sleep not to take their lives for granted, love them. Often misconstrued as an ethnic illness, only it is so necessary to understand that the generation intermix marriages have background unaware illness in bloodline. Check blood in advance of any potential relationships for tests to help you take better care of yourself and your partner and children. Discover in generations of family trees ang unusual blood history if different to shape of flexible regular red round blood cells. Sickle cells can affect white families, causes numerous health problems for those born with the sickle cell condition. Sickle cell shape means the blood does not flow easily around the body as in regular blood circulation. As a result the sickler person suffers from the severe sickle pain resulting of blockage of the veins. Extreme severe pain affects vital organs in the body so can damage parts of the body of sufferer. Sickle cells tissues die quickly than the healthy red blood cells resulting in anaemia as there are less effective red blood cells in body to transport oxygen hence health issues.Sickle cell anaemia is a genetic condition so a baby is born with sickle cell disease if each parent carry a copy of the genes. Each child has 25% chance unaffected, 50% chance of being a carrier of sickle cell gene and 25% chance of full sickle cell. So it is essential Sickle cell is treated as part of the mainstream health care system not just an ethnic minority people of African, Caribbean, or Middle Eastern, Eastern Mediterranean, Asian origin affected by sickle cell disease. The Northern Europeans affected in Greece and other places as people of African and Caribbean heritage affected. NHS needs training to understand the unpredictable nature of sickle cell illness in community to support to all families to get on with their lives. NHS throws away 10 billion pounds worth food waste money needed for better health care treatment in all hospitals including sickle cell anaemia.
Sickle Cell Anaemia Facts
- African Caribbean heritage often mostly affected
- Those with sickle cell trait genes pass on sickle cell to children
- Worldwide 305,800 newborns with sickle cell disease in 2010 although all birthday unrecorded worldwide
- In 2010 57% newborns with sickle cell from India, DRCongo, Nigeria
- Universal screening program could save the lives of 10 million babies
- Sickle cell disease is most inherited blood condition in the UK
- Average Life expectancy for sickle cell in high income countries is 40 – 60 years but with treatment live to 80 years and beyond.
Sickle Cell Cord Cell Treatments
Children with sickle cell disease have now successfully been treated with cord cell transplant. Initially, this treatment was thought to be too toxic to extend to adults with the disease after their bodies have been greatly weakened. However, researchers in Maryland have modified the transplant procedure to ascertain it’s potential in treating adults with sickle cell disease. Between 2004 and 2013, 30 patients with severe sickle cell disease enrolled in trial. The patients, between the ages of 16 and 65, underwent a less toxic form of chemotherapy before they received cord cells donated by a healthy sibling. Researchers discovered a sickle cell disease was reversed in 87% of the patients. The patients had fewer hospital admissions; reduced drug use to treat the pain associated with sickle cell and had normal haemoglobin. A year after their transplants, 15 patients stopped taking immunosuppressant medication. In addition, massage helps blood flow so family can massage babies and adults to enhance blood circulation. Those who do not want blood transfusions have other serum blood saved during surgery using own blood or bloodless surgeries. Today, billions of people are unaware of Sickle Cell which is NOT CONTAGIOUS so you cannot catch it. Yet awareness and the proper training on how to handle the person suffering especially during their critical moments of crises saves lives. It is very important patients receive card and support required and not considered lazy people exploiting others. Their food and nutrition has to be healthy for their body to work well and harder to supply a basic basic flow so their haemoglobin is always lower than average person’s. It is good to educate schools, churches, and nurses in addition, doctors and carers on suitable care needs. Families can have a Sickle Cell marital counselling to help chose a partner. Others check in advanc family tree bloodline so safely decide to make informed choice for the future.
We are raising £5,000 to fund The Adjoa Annan Foundation to increase people’s awareness of Sickle Cell Disease globally to improve services. Many more Health and medical professionals need urgent training on how to handle and manage sickle cell patients better. Funding is the new way to raise money for any personal cause on JustGiving to improve lives of others. Adjoa would have been 31 today, instead of celebrating birthday picked up her death certificate, but in keeping with the girl we have setup the Adjoa Annan Foundation for Sickle Cell Disease in her memory. We will be working for people with Sickle Cell Disease where ever they are. We hope to achieve 3 things within the year: Develop an App that will allow people with Sickle Cell to share rate their hospital stay. This will put hospitals on their mettle. At Adjoa’s inquest found out that hospitals are not used to being questioned about their treatment of any person with Sickle Cell Disease. With an attitude of Trust me I am a doctor or the expert so leave treatment to decide yet often unfamiliar with critical sickle cell symptoms. The App will put people with the disease in the driving seat to be able to say how hospitals perform. With a map of where people with Sickle Cell are in the world and what is being done for them Adjoa Annan Foundation will be first people to do this. Sickle Cell exists in Europe and Africa, Caribbean, Middle East, Australia and New Zealand. This research will be the calling card to make difference to the Sickle Cell patient. An annual prize to medical students who write best Essay on all aspects of Sickle Cell will make medical profession aware of serious issues surrounding Sickle Cell. Important to bring awareness through designed webpage, Twitter Facebook accounts and other sites. People on our side, President Obama wrote condolence letter for Adjoa and will be reaching out to him to play a role in the foundation. Celebrities must support to give generously as possible to Foundation to get on the feet. Donations, no matter how small is valued and appreciated even the smallest amounts. The symptoms include pneumonia. It is widely known that many sufferers develop other secondary illnesses which can have a significant impact upon their health and lifestyle. Some of these include:-
- Heart problems
- Stroke (brought on by hypertension or prolonged pain episodes)
- Kidney failure
- Eye deterioration (bleeding in the eyes/floaters, which can lead to blindness)
- Mobility issues (caused by necrosis of the hips – the death of most or all of the cells in an organ or tissue due to disease, injury, or failure of the blood supply).
- Chronic and disabling pain.
- Thyroid disease
- risk sudden acute pain in the chest with coughing of blood often can be seen. The person may get fever and experience shortness of breath due to shortage of oxygen in their blood circulation.
- Sometimes lung crisis is seen as a result of scarred lungs or the other lung related problems caused by lack of blood oxygen.
- Debilitated intense pain demobilise the person unable to take personal care of themselves. Sometimes the most crucial moment for caring for sickle patient.
- The person relies totally on others for help to be provided for them due to crises.
- Oxygen breathing equipment used to help alleviate pain and to ease breathing process.
Chest pain causes heart attack and stroke so must be GIVEN PRIORITY URGENT CRITICAL INTENSIVE CARE TREATMENT EVERY SECOND COUNTS TO SAVE PRECIOUS LIVES.In addition many suffer from a sudden abdominal crisis and constant pain in the abdomen seen in an affected person. Sometimes these pains spread all over the body simultaneously causing sickler to be very critically ill. The intense pain prevents ability to move so the person needs help for personal care. It is alright to train the patient and staff to use adult disposable pants if available for care in such times. So person needs urgent care to be taken care almost like a baby due to excruciating unrelenting pain is followed by swelling hands, body, bone crises, nausea, vomiting, diarrhoea.
We accept referrals and do referrals to relevant professional agencies
We are available to train frontline staff, at your convenience.
We provide free services to staff or professionals to ensure the holistic best care treatment for patients.
- Treatment includes massages to enhance blood flow circulation
- Encourage to eat healthy foods, cut out fat, oils and butter as it causes cholesterol, jaundice so coagulates and thickens sticky blood blocking veins causing acute sickle crises
- Ensure they sleep well, hydrate and drink water not carbonated fizzy drinks to take help blood flow.
- Family support is crucial so must be allowed to have personal carers during crises as often demobilised
- Volunteers help care for them in a community setting as not safe to be alone during critical trauma
- Training Frontline doctors, nurses, and ambulance services to give an urgent emergency help and oxygen to help them breath better.
- In extreme pain may need personal assistance with shopping, cooking, cleaning, washing, personal care if unable to move by themselves.
- Most live at home longer, essential for support during sickle crises
- Never assume if can eat, talk, walk unaided therefore fit because it is invisible blood and bone condition
- Above all, our aim is to help them to be treated properly to live longer
- Thank you for encouraging people to be more positive towards sickle cell condition and more thoughtful of what to say to them especially during crises. People can use sense of humour to share a joke to create laughter even in the midst of pain to ease tension or stress pressure of treatment environment.
- Others prefer empathy of being allowed to verbalise all negative feelings before they feel listened or and heard so let people know what you like they do not read minds.
- It is important employers be aware and understand sickle cell pain affects work performance and input compared to healthy, fit and able colleagues so not treat you as “lazy” or having attitude problems.
- Tell them it is acute blood and deep bone disease with constant pain and chronic pain during crises so cannot function as usual during crises. Give them leaflets on sickle cell condition to educate staff to have due consideration as part of your human rights for health.
- Take advantage of September Sickle Cell Month, bring awareness not use excuse not charity to treat sickle cell sufferer differently due to their genuine health needs.
- Refer read detailed information on sickle cell crises needs, treament and vital support essential from frontline staff.
- If possible join and attend support group meetings and have peer buddy mentor who identifies with your experience.
- Budget cuts reduce the number of doctors, staff employed so the few available are overstretched beyond limit. Be realistic not to expect too much exclusively because of other emergencies taking place require their attention simultaneously.
- Take more control of your life and work towards hydration, and rest, eating well, taking care of yourself, ask others in advance how you need help, support, be specific.
- Credit crunch affects resources and basic human dignity, so if on one is feeling you and acknowledging you as part of clinical treatment, tell people about your feelings or call attention to your specific situation. All the best and you will overcome.
- With God all things are possible.