Emilie Larter and Adam

Emilie’s journey started in September 2014 when the charity volunteering for in Uganda received a call about the new born boy in need. Baby arrived after the burial of a woman who died because of excessive bleeding after birth. So Adam was her child including 6 others yet had not received any breast milk or formula and no one able to care for him. Sadly, his biological mother left this world before even giving him a name,” said Emilie. All took to Adam with random acts of kindness in and she became the little one’s sole carer. And the sleepless nights were down to her, but they were no bother. She felt privileged to help the little helpless baby but felt she did not do much. Yet never a day went by to be bored to sit and watch him for hours.Emilie Larter and Adam

Over the next two years, Emily visited Adam as often as she could by working in a teaching job in the UK. But the short visits were not enough and she moved back to Uganda in August 2016 after finding work at an international school. Now Adam, who is two-and-a-half, lives with her full time while she tries to adopt him. Emilie said:  She feels like his mum already. We had such a strong bond every time I was coming out but especially now since he’s been living with me. Emilie has to foster Adam until August before applying to the Ugandan courts to legally be his parent. So needs permission from UK to bring Adam back to Britain as he call her mum. She is hopeful they will live together in UK by the end of the year. Emilie plans to fund adoption until she lost her job in December. So prompted her to set up a Go Fund Me crowdfunding page to pay for the process. Emilie’s parents help to support her living costs as she takes her teaching positions to cover Adam’s fees. AdamEmilie admits becoming a mum at age 25 though not on her agenda, she does not regret the path she has taken. It was not in my plan but the last two-and-a-half years in Uganda and Adam is all she thinks about. So either talking about or thinking about him imagines perhaps may not have kids for another 10 years but does not regret her decision and choice to be the mum to Adam. So will be amazing to bring Adam home as her own finally.” While Emilie received overwhelming support for her decision, some online comments question why she wants to remove Adam from his home country. She is coming back to Uganda for him so wants to continue to do that,” she said. Emilie does her best to keep Adam in touch with the village he comes to see siblings or neighbours. Emilie does her best as his mum though mother’s love is the best most important things. And Adam will never get natural biological love from his mother because unfortunately she sadly passed and he was orphaned. Adam’s story is how God turns what devil means for evil to turn to good blessings. So what is impossible with man is POSSIBLE with LORD God Almighty.  God bless all the kindhearted generous donors in Jesus Name. In a similar true story a little 2year old white who girl chose black doll was asked if she did not want white doll like her. She answered both are doctors and equally beautiful playing with black doll.


Katie Cooke, Dr Colin DohertyAmong runners one moment a woman, collapsed on the ground and frothing at the mouth the next. For a short time she is lost to the convulsion and then she scrambles to her feet and sprints away. Katie Cooke will not let epilepsy get in the way of a race. The 19 year old student from Cherrywood South Dublin has what her specialist doctor calls “an arsenal of epilepsy, contends with 15 convulsions daily that makes her unconscious. Katie said, “her whole body shakes feeling her muscles jump, like everything has been sucked out of her so cannot breathe. So every single day she often loses control.  Despite having to cope with multiple seizures, Cooke won prestigious events including her age group in the Dublin City Marathon and she runs 5km in under 17 minutes. She is often seen pounding the streets with her running partner, Dr Colin Doherty, who is her consultant neurologist. But she was not always so athletic.Katie Cooke with a running trophy

Image copyrightKATIE COOKE

Diagnosed at the age of nine with frontal lobe epilepsy, she managed condition with medication until it deteriorated when puberty hit and her hormones started “kicking up.”She was not able to get out of bed, unable to do anything for herself and could not really speak. My Mum was dressing and showering me,” she says. Cooke was admitted to Our Lady’s Children’s Hospital in Crumlin where she remained for 10 months. Despite being involved in numerous medical trials she regressed, lost control of her back and hips, and by the time she was discharged she wasn’t able to walk. And she could not hold herself up in a wheelchair for about seven months but being stubborn person wanted to prove to people what she could do. After a lot of physio started jogging every day and started to absolutely love the freedom.

Katie Cooke in a wheelchair

Image copyrightKATIE COOKE

Cooke now runs every day and says a missed session sees the tiredness and dizziness of her earlier condition return.  Running only alleviates her symptoms, it has not been a cure. The raised heart rate brought on by running triggers more seizures than if she did not run, but Cooke says it improves her general well-being which is a negative worth accepting. Her neurologist, Dr Doherty, has weighed up the pros and cons from a medical perspective. “The particular challenges of having epilepsy and long-distance running are similar to walking challenges too and I think the general benefits outweigh these risks,” he says. “If you took the average long-distance runner and measured all their health parameters against someond who does not run you would find, no matter what disease or disorder they carry with them, they are better off.” So health conditions affected by starting exercise, it is always important to consult your doctor first.

Dr Colin Doherty explains epilepsy

Various scientific images of brains

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The brain consists of about three billion cells and all of these cells are active, but they do not fire together, the brain is a de-synchronised machine. A signature of epilepsy is the cells fire together in a synchronised way. If a million cells fire together it causes a change in behaviour, when all three billion cells fire together that causes convulsion or a fit. There are about 40 distinct types of epilepsy. In some cases people will just stare blankly, others will wander around in a confused state and there are those who fall to the ground with convulsions. Competitive running was initially a non-starter for Cooke. As soon as she had a convulsion during a race paramedics withdraw her from the event, but a chance comment at one of her consultations led Doherty to offer himself as her running partner and he has kept her on track ever since.  He says: “I’m a specialist in epilepsy but my sole role when running with Katie is to stop people from taking her off in an ambulance. I just stand there and say ‘Katie’s fine, I’m her doctor, she’s going to recover.” Despite Cooke’s seizures, the nature of her epilepsy means her body does not require lengthy recovery time, she is able to immediately get up and run again. Doherty believes it is her fitness levels which help with recovery._93538541_mediaitem93538539.jpg

Hear more from Katie and Colin

Listen to the BBC Ouch talk-show to find out more about Katie Cooke, Dr Colin Doherty and their running partnership. “Katie is a very serious runner, and she trains properly. I’m very confident that this is a really positive experience for her,” he says. As well as sport, college, Cooke also has to navigate a social life and relationship with partner Jack, a role most daunting at night when Cooke’s seizure’s make her scream, thrash around and cause the bed to shake and shudder. Cooke says: “He’s one of the most chilled people I know and he sleeps through my seizures which is a bit weird. He wakes up for the odd one because some are quite violent and was slapped in the face before, but he just falls asleep again.” In terms of intimacy Cooke says sex does not trigger seizures, although a fit can occur at such times, and women report an increase in convulsions around the time of ovulation and their period.Jack and Katie Cooke

Image copyrightKATIE COOKE

Her nightime seizures are accompanied by hallucinations of a shadowy man who she says “comes for her” and it is these which leave her most exhausted. She does not sleep well at all,” she says. Her education suffered and she missed the majority of secondary school. Despite that, she managed to cram three years worth of curriculum for the Irish Leaving Certificate into one year, secured a place at college to study sports management. Doherty calls her a “remarkable young woman” for all she has achieved while handling so many severe convulsions on a daily basis. When people watch Katie drop to the floor mid-run it is alarming but Doherty believes being public about it will help others with the condition. So there is need to facilitate people to live a normal life as possible and they need to be encouraged to do everything, he says. The biggest barrier is not the safety issue but the perceptions of other people.”

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_93856458_img_3770Childbirth loneliness transition affects mothers in isolation without extended family support. As many experience, Molly Forbes is a sociable person but became very lonely when she had a baby
A commission started by murdered MP Jo Cox is investigating loneliness in the UK, which is an epidemic affecting people of all ages and backgrounds. Here, two young women share their stories. In 2010 Molly Forbes had her first child, Freya. But after the birth she was confronted with something she had not prepared for: loneliness. A “sociable person”, Molly – then 26 – was one of the first of her friends to have a baby. Her husband was out at work all day and she did not have close family living by. The loneliness of being a new mother was a real surprise for me. It just hit me,” she said. You are suddenly at home with a baby. You feel safer there so you stay home but it makes you more isolated. “When you go out, you want to be seen to be doing a good job and being happy. If you admit you’re lonely, you might be labelled as not coping. Molly Forbes says you want to be seen to be doing a good job and being happy says Molly. The commission planned by West Yorkshire Labour MP Jo Cox before she was murdered last June – says a fifth of the population privately admit they are “always or often lonely.”_93856435_photo-17
But two-thirds of those would never confess to having a problem in public, it says Molly, from Devon, said that rather than being honest about how she was feeling, she had “put a brave face on – and that can make you more lonely”.
“Looking back, I was definitely feeling quite anxious. “I was worrying about money, about whether I’d go back to my job – and when you don’t have someone to talk to, these worries can spiral out of control.” Molly had lots of friends, but found she couldn’t talk to them about her post-baby concerns. She started writing a blog and made connections with other mums online, and from there I started meeting up with people and found friends that way. The commission says three-quarters of people who are lonely on a regular basis do not know where to turn for support. It is looking for practical solutions to beat loneliness. Molly’s advice for new mums? “Spend time making friends with pregnant women, so you have a support network ready to go once the baby is born.” Find other mums to provide support network Molly said._93885386_ornstein

Who is feeling lonely? Parents – Action for Children found 24% of parents surveyed were always or often lonely. Teenagers – 62% are ‘sometimes lonely’ and one in 20 never spend time with friends at weekends. Carers – 8 out of 10 carers feel lonely or isolated as a result of looking after loved ones. Refugees and migrants 58% of those surveyed in London cited loneliness and isolation as their biggest challenge. The elderly 1 in 3 people aged 75 and over say feelings of loneliness are out of their control. The deafblind charity Sense has said that up to half of disabled people will be lonely on any given day. Have you experienced loneliness? Do you have advice or tips about how to deal with feeling isolated? Talking is key says Michelle so avoid ‘Bottling’ it up. For Michelle Ornstein who has a learning disability, there is nothing worse than being alone. “When Iam here on my own, I feel really down and anxious,” she said. The 22-year-old, from Essex, said her anxieties had got worse in recent years, leading her to leave college. There was an incident on school bus where Michelle was wearing her hearing aids close to a group of people being loud. “I just burst out in tears on the bus. I got myself so worked up and thought this is it. I cannot do this Michelle said. At one point I couldn’t be left on my own at all, I would not let [my parents] out the door. Spending time out of the house and with friends is key to countering loneliness but, Rossanna Trudgian, the Head of Campaigns at Mencap explained, a third of youngsters with learning disabilities spend less than an hour outside their homes on a Saturday. “Social isolation and fear of negative attitudes can remain huge barriers towards feeling welcome and included in society,” she said. But things have got better for Michelle. Talking things through with her family helps and this week she starts a new course. Michelle’s advice is talk she said: “If you keep it to yourself, you will bottle it up to build up anxieties so not go out.”‘Few admit it.’ Michelle is not the only young person experiencing loneliness. _93856429_photo-2

The Mix is an online support service for under-25s. This year, it has seen a 26% rise in the numbers of those accessing loneliness support service, compared to the previous year. Jo Cox begun setting up the commission before murdered in her constituency last June. Community manager James Pickstone said loneliness was an underlying issue shared by many people who visit the service though it was “rarely discussed openly.” He said: We see a lot of young people feeling very isolated at college and university, living away from home, not having the social life expected associated with university experience.” Younger people experience loneliness differently from how older adults do. Prof Graham Davey from the University of Sussex explained “Younger people appear to be focused on the friendship networks and number of relationships they have and experience loneliness as a function of the fewer friends they have.” In today’s society, friendship networks represented nowhere more obviously than on social media. Whether perceived to be a successful user of social media is with many followers one is likely to have impact on feelings of loneliness, anxiety, paranoia and mental health generally,” the psychology professor said. But you won’t find too many status updates about feeling lonely because ultimately Prof Davey argued loneliness has a stigma and few people want to admit they’re lonely. Have you experienced loneliness? Do you have advice or tips about how to deal with feeling isolated? Email your comments to

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hqdefault-3GLORY to God protests of current events are endtime signs Jesus warned about so is the testrun to GOD’S KINGDOM coming soon to take over all world kingdoms as predicted by Book of Daniel in the Bible. So only THOSE IN CHRIST God calls His Children although all human beings are GOD’S creation. God allows only His Children to be part of His KINGDOM. This current changes taking place will soon turn into Rapture when Christ accepts only those in Christ into heaven alive before the great tribulation commences. All who reject Christ as GOD’S Chosen Ambassador will be left behind. And during the Reign of Christ on earth after His Second Coming only those who accept Jesus will belong in GOD’S Rule over earth. All others face wrath of God so judged then condemned into hell fire. So the action to take is have a personal relationship with God in Christ through the Holy Spirit to qualify for God’s GIFT of eternal life FOREVER. Sadly, God will turn away those who reject His Son Jesus Christ the MESSIAH so take action make sure you belong to God in Christ Jesus.
Mankind needs a change of heart and mindsets to love and embrace one another by respect and kindness to live in peace and unity together. Everyone requires a mind of Christ to please and obey God’s words. For no man can save mankind except God and in fact God says cursed be those who put confidence in man rather than Trust in God to SAVE them. Look up to God not mankind’s actions thousands of years that prove there will be no peace until the PRINCE OF PEACE Yeshua takes over to Reign on earth in Perfect Peace. Draw near to God and GOD DRAWS NEAR to you always with you so never alone in Jesus Name. This world event verdicts are evidence of precedents to warn all people before it is too late to be saved. God is everywhere so you cannot run or hide from God. The Bible in Psalms 139:7-10 says, where shall I go from God’s Spirit? Or where shall I flee from God’s presence? If I ascend to heaven, you are there! If I make my bed in Sheol, you are there! If I take the wings of the morning and dwell in the uttermost parts of the sea, even there your hand shall lead me, and your right hand shall hold me. Jesus calls and warns to wake up now to seek God today to intercede for yourself and loved ones including perceived enemies. God Loves you deeply so do not be deceived by the devil to reject Jesus God’s Son the only Hope of Glory for mankind so be saved for eternal life.



Albinism affects production of melanin, the pigment that colours skin, hair and eyes. In albinism, cells produce melanin but does not work properly because of an inherited genetic mutation faulty genes. Albinism itself does not need treatment, but the associated skin and eye condition and other health issues can affect them. Most usually one of a kind in families or communities so can attract attention. Sadly often people do not realise a direct connection between blacks and an albino gene that creates white people so due to racism treated as disorder rather than variety of humans God continues to create to confound the world today. And above all, being different as an albino in majority black community environment is also misunderstood as possessing the mystical power to be unique. So sought after for transfer of perceived inherent power to enhance others through their body parts to help others gain wealth. It is important to educate both blacks and whites about albinism to understand the individual differences as the world is not just made up clones of a particular kind of people on earth. They are all made by GOD IN HIS IMAGE AND LIKENESS so very precious to GOD WATCHING over them with Jesus and  mighty angels. So Romans 12:2 says, in the Bible, do not be conformed to this world, be transformed by renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.


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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:Picture-1
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.
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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.CZu3QuIWEAAsWDT

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.stream_img

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.X2604-S-24

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.sickle-cell1-300x195

genmod11.jpgThen 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.joint-pain
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.overcoming-stigma-in-sickle-cell-disease-8-728

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.    overcoming-stigma-in-sickle-cell-disease-16-728
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. overcoming-stigma-in-sickle-cell-disease-3-728Often 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.Adjuah Annan Foundation for Sickle Cell Disease .

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. care-of-sickle-cell-disease-patients-process-improvement-change-with-nurses-9-638The  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
  • Anaemia
  • 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
  • Arthritis
  • 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.lung-anatomy.jpgIn 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.Abdominal-crisis

We are raising awareness of sickle cell/ Thalassemia health issues. We provide information about this condition to the frontline staff to become more aware of Sickle cell needs. We hold talks on the IMPACT of Sickle cell on treatment of a WHOLE PERSON not just the symptoms. Awareness to all people on holistic care so vital treatment services understand sickle cell condition, additional issues or problems caused by sickle cell.
* The weather changes affect sickle cell especially from Summer to winter and vice versa. Their body finds it harder to adjust changes so some experience crises in between changes of weather.
*Must be kept warm at all times because cold triggers sickle cell acute crises.
*Must be allowed to drink water to be hydrated to take a bottle of water into a classroom throughout lessons.
* To keep coat on in classroom if cold.
* To use bathroom during lessons.
* To have buddy peer mentors to keep in touch and update on courses and notes.
* To have a support staff worker or one to one tutor to catch up on lessons lost due to time spent in HOSPITAL.
* Must be allowed to take medications prescribed by their doctors.
* To be aware chronic pain delays course work so affects timeline of assignments and impacts exams.
*Cannot perform strenous physical task detrimental to their health.
* Exempt from PE, swimming if unwell.
* Must not be seen as lazy because of the symptoms of the sickle cell condition.
*When crises occurs some treatments require blood transfusions due to the anaemia because haemoglobin count is extremely low caused by the sickle cell.
*Treatment includes regular massages to improve blood circulation.
*A person with sickle cell may need to wear circulation stockings at all times, this will help to keep leg ulcers away. 
1. Do you know your Sickle Cell Status? To help identify potential patients.
2.  Are you a Sickle Cell Sufferer and do you receive appropriate treatment?
3. Are you aware of Sickle Cell Care or receiving support in the Community?
4. Do you have regular massages to help enhance blood circulation?
5. Have you any health needs related to sickle cell condition?
Additional Services We Provide:
We provide Social Care to the Sickle Cell patients to help live on a daily basis with community support.
  • 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.