Former Coronation Street star Victoria Ekanoye calls for more research into Sickle Cell disease
A former Coronation Street star who lives with Sickle Cell disease says research into the UK's biggest genetic blood disorder would be further ahead if it was not seen as a "black disease".
Around 15,000 people live with the incurable condition which mostly affects those from African and Caribbean backgrounds. But Victoria Ekanoye says it can affect anyone of any ethnicity.
The 43-year-old says she was "very quiet" about her own diagnosis when she was a younger woman but "shouts it from the rooftops" now because "we need the visibility".
"People say that Sickle Cell is a black disease but it really isn't," she added. "Any single person can have the Sickle Cell gene. It developed as a mutation gene as a defence mechanism against malaria.
"It may be controversial to say but if it wasn't a specific demographic that mainly struggled with this condition then we would be a lot further ahead in treatment."
The mum-of-one, who starred in the ITV soap for three years, was diagnosed with Sickle Cell in her 20s and says she often experiences painful episodes and exhaustion.
"My mum is a carrier, my father passed away from it and now my son is a carrier," she said. "I'm always tired, especially being a mum, but the main thing I experience is the Sickle Cell crises.
"Something has happened along the way to cause my blood to not flow correctly and, when it does get clogged up in the veins, it can cause excruciating pain."
Victoria, who is originally from Bury, supports the charity Sickle Cell Care Manchester which has just celebrated its 10th anniversary with a fundraising ball in Worsely, Salford.
She said: "It has blown me away the amount of blood, sweat and tears of getting to 10 years. We asked everyone to wear read and everybody showed up. It was beautiful."
What is Sickle Cell disease?
It is a group of inherited conditions that affect the red blood cells and can cause pain, infection and in severe cases it can be life-threatening. The most serious type is called sickle cell anaemia.
People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels.
It is a life-long disease and particularly common in people with an African or Caribbean family background.
What are the symptoms of Sickle Cell disease?
According to the NHS, people born with the blood disease tend to have problems from early childhood, although some children have few symptoms and lead normal lives most of the time.
The main symptoms are:
Episodes of pain known as sickle cell crises are one of the most common and distressing symptoms of sickle cell disease.
More vulnerable to infections, particularly when young.
Nearly all people with the disease have anaemia, where the haemoglobin in the blood is low.
Some people also experience other problems, such as delayed growth, strokes and lung problems.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Daily Mail
15 hours ago
- Daily Mail
I flew to Belgium for my dream boob job - what happened next was the stuff of nightmares, my surgeon had never seen anything like it
A This Morning guest has opened up about her terrifying ordeal following a breast enhancement that left her with swollen joints and impaired vision. Charlotte Reddington Smith appeared on the ITV daytime chat show to discuss the horrifying after effects of getting her dream boob job. The interior designer told hosts Andi Peters and Emma Willis that she made the decision to get the procedure after giving birth to her son at the age of 24. 'I'd always been curvy growing up and my body had changed a lot since having my first son,' said Charlotte. The mother explained she had several friends who had flown out to Belgium to get boob jobs, adding: 'I just followed, I just went "Do you know what, I think this is what I want to do." 'I just looked at all the positives and not any of the negatives.' Charlotte had had the implants for six years when she started noticing her health declining. She experienced swollen joints and her eyesight started going blurry in one eye - but no medical expert could identify the source of the issue. Once engaged to marry, Charlotte then had a second pair of implants put in, opting to go down a size. 'That's when I really noticed my health just went massively downhill,' she said. Given Charlotte's desired outcome, she said the surgeon should have advised her to have an 'uplift' - lifting the breasts higher up rather than enlarging them with implants. Eventually, Charlotte's mum connected the dots and questioned whether the implants were causing symptoms. 'I laughed,' said Charlotte, adding: 'How could implants have anything to do with how my body's reacting? 'I was having MRI scans, weekly eye tests, they were testing me for rheumatoid arthritis, then they were saying it was early onset menopause, but I was only 27 or 28.' Charlotte did some research and found she had Breast Implant Illness, known as BII. She joined a Facebook group of other women who had been experiencing severe health symptoms, then explanting and feeling subsequently 'so much better.' Charlotte discovered her implants had been recalled by the manufacturer - meaning they had been deemed unsafe, but she had not been alerted by her surgeon. Via the group, she realised the recalled implants were causing 'rare breast cancers in women' owing to the material which flaked off and spread around the body. Dr Zoe Williams appeared on the programme, and explained that BII is not currently recognised as an official disease - but studies do support the fact that many women get ill from implants. Some NHS sites that offer breast augmentation, however, do list BII as a potential side effect. 'There are two types of implants recalled in the UK,' Dr Zoe said. 'The one that Charlotte has is made by a brand called Allergan, it's a Biocell implant and yes it has been linked to a very rare cancer. 'The implants will not be used on anyone else, but they weren't recalled out of people's bodies unless they were having symptoms because the risk of this cancer is extremely rare.' Dr Zoe said that rupturing is rare, and a silent rupture is where there's no obvious sign that it has taken place, but it can happen. She advised that a monthly breast check is the best way to protect yourself if you've had implants. 'I was so tired of feeling so unwell and not being the best mum to the boys,' said Charlotte. 'I'm so happy I had them out, the surgeon even said, "Well done you for listening to your body and your intuition because I've not seen a rupture like this in a long time." Charlotte's implants had burst, with no external indication that anything had gone wrong. 'The silicone was then floating around my body,' she said. 'I've had scans since and I have a lot of silicone now in my lymph nodes because my body's trying to protect itself from the silicone leakage.' 'You live and learn,' said Charlotte. 'Hindsight is a wonderful thing.'
Scottish Sun
a day ago
- Scottish Sun
Why does my pee smell so foul? It's the worst smell ever!
Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) A YEAR ago I had a health scare that landed me in hospital – and I spoke about it last week on Loose Doctors, a one-off Loose Women special on ITV. On a weekend trip with friends, after a swim in the sea, I noticed my heart rate was really fast. 4 Dr Zoe Williams helps Sun readers with their health concerns Credit: Olivia West It eased a little for a few hours before another attack in the evening, and I was taken to A&E. For the first time in my life, I thought I could die. My heart rate reached 300 beats per minute (compared to a normal of 60 to 100) due to something called atrial flutter, which can lead to a stroke or heart attack. I was just unlucky because my heart is healthy. But it gave me a new perspective on what matters and I'm even kinder to my body. We think of heart issues as a male problem, but it's a leading killer of women. It's important to be vigilant about your health. Make sure you take the free NHS health check offered every five years from the age of 40, which can spot risky conditions. Meanwhile, here's a selection of what readers asked me this week . . . WHY DOES MY PEE STINK? Life-saving NHS health checks to spot killer diseases will be carried out at work Q: I'M a 73-year-old man and my urine must be the worst smell ever. It's so foul. I have a dodgy kidney that works at only half the rate it's meant to and I've suffered with numerous urine infections. They clear up with antibiotics but, after a few weeks, come back along with the foul smell. I've also been clear of prostate cancer for five years. A: It sounds like you've really been through a lot, health-wise. I'm glad to hear that your prostate cancer is now in remission, but I do understand how frustrating and worrying these ongoing urinary issues must be. A very foul-smelling urine can be an indicator of an underlying health issue. It can be caused by infection, kidney problems or issues with waste product build-up in the body. Your history of a dodgy kidney that functions at half its capacity is a key piece of information. Some types of kidney problems can increase the risk of UTIs, especially those that interrupt the normal flow of urine from the kidney to the bladder, such as kidney stones which can lead to stagnant urine in the system, where bacteria is more able to grow. Have you had a recent scan to assess your kidneys, and have you been assessed by either a urologist or nephrologist (kidney specialist)? This is important, as it is crucial to find out if there are any potential blockages. An enlarged prostate gland can also stagnate the flow of urine as it leaves the bladder, and some of the treatments for prostate cancer can also cause issues. It's important to keep treating each infection, and to stay well hydrated and not delay passing urine when you get the urge (as much as possible). But if these measures alone are not working, then there are also treatments to prevent further infections that you should explore with your specialist team. Prophylactic antibiotics are a daily low dose of medication that can reduce UTIs. Methenamine hippurate is an alternative to daily antibiotic prophylaxis for recurrent UTI in men, which has quite recently been added to the NICE guidelines. I hope this helps to guide your conversations with your healthcare team – and please do let me know how you get on. TIP OF THE WEEK WE increasingly need insect repellent when travelling abroad, owing to the threat of mosquitos spreading diseases, including in European destinations. You can grab a bottle for just a few pounds at the pharmacy or the airport, and this will protect you and your family from bites. IS PREDIABETES CAUSE OF FOOT PAIN? Q: CAN you tell me what is causing the pain in the soles of my feet after walking for about two hours? Could it be because I was diagnosed with prediabetes? 4 Dr Zoe helps a reader who has pain in the soles of their feet Credit: Getty A: This could be caused by several factors and, while prediabetes can be related, it's not the most likely cause in this scenario – when pain comes on after a significant amount of walking. Higher up the list would be footwear issues, plantar fasciitis or muscle fatigue. Worn-out or unsupportive shoes can lead to poor shock absorption and pressure on foot muscles and ligaments, so opt for shoes or trainers that are well-cushioned and supportive. Flat feet or high arches can exacerbate the issue. So if you have either of these you may benefit from being assessed by a podiatrist, for orthopaedic insoles for long walks. Plantar fasciitis typically causes sharp heel or arch pain that is made worse by prolonged standing or walking. It's caused by overuse or strain of the plantar fascia (a ligament on the sole of the foot). Walking for more than two hours, especially on hard surfaces, can cause muscular fatigue in the feet, particularly if you're not used to that level of activity. So if the walking is a new activity for you, you may need to scale back initially. But I hate advising people to do less activity, so try to increase the pace of the walking you do. Essentially, a shorter but faster walk, and then build distance gradually as the muscles in your feet get stronger. Do some stretching and strengthening exercises for your feet – there are good NHS videos on YouTube for this. It is possible to get nerve damage with prediabetes – this is called 'impaired glucose tolerance neuropathy', which is damage that can begin even before full-blown diabetes. But this would typically be described as tingling, burning, numbness or pins-and-needles. Also, it is often worse at night-time, rather than after activity. BOOK A MIDWIFE ONLINE PREGNANT women can now see a midwife 'at the touch of a button', it was announced today. They can book their first midwifery appointment via bypassing the GP. 4 Pregnant women can now book their first midwifery appointment via Credit: Getty Traditionally, expectant mothers would see their GP to tell them they are pregnant before a referral to midwifery services. But only 62 per cent of the first 'vital' appointments happen within the first ten weeks of pregnancy, health officials say. NHS England said it is estimated the new service could lead to 180,000 fewer calls to GPs and up to 30,000 fewer GP appointments each year. Officials stressed that women can still go in to see a doctor if they would like, for example, to discuss management of a long-term health condition. Kate Brintworth, NHS chief midwife, said: 'Making this process simpler at the touch of a button is a vital step in empowering women to take control of their pregnancy journey right from the very start and improving access to timely, personalised care.' Health and Social Care Secretary Wes Streeting said: 'Early pregnancy should be about joy and excitement – not wrestling with NHS bureaucracy to book a midwife appointment. 'That's why we've overhauled the online referral system. "No more endless phone calls or form-filling. "Just a simple online service that lets you book those crucial first appointments with a few clicks.' SOUNDS LIKE CANCER… THE early signs of cancer could be detected from your voice, scientists say. Using AI, subtle changes in vocal acoustics helped pick up lesions in people diagnosed with voice box cancer. Researchers believe AI could be trained to hear these changes within a 'couple of years'. There are around 2,000 new cases of voice box (laryngeal) cancer in the UK each year. A hoarse voice for more than three weeks can be a key symptom, and should be investigated by a GP. Using AI for diagnosis could spell the end of uncomfortable tests, such as a biopsy or nasendoscopy, in which a thin tube with a camera is passed through the nose down the back of the throat. The US team, part of the Bridge2AI-Voice project, gathered voice recordings of 300 patients, some of whom had voice box cancer. They study, published in the journal Frontiers In Digital Health, found 'marked' differences between men with and without cancer or a voice box disorder, such as nodules or polyps, specifically with the harmonic-to-noise ratio. It's possible the same will be found for women, with a larger data set. Dr Philip Jenkins, of Oregon Health & Science University, co-authored the study. He said: 'Voice-based health tools are already being piloted. 'I estimate that with larger data sets and clinical validation, similar tools to detect vocal fold lesions might enter pilot testing in the next couple of years.' Q: HAD a total knee replacement nearly seven years ago and have been in constant pain since. At my last consultant appointment, it was suggested that I have steroid injections in my knee. 4 Dr Zoe helps a reader whose been in constant pain since their knee replacement Credit: Getty But as I had a complete knee replacement, what would they inject into? I feel like I'm just being messed around. A: I'm really sorry to hear you're still in pain. It's understandable to feel frustrated and even suspicious when treatments don't make sense. When you have a total knee replacement, the joint surfaces are replaced with metal and plastic components, so there's technically no longer any cartilage or traditional joint space like in a natural knee. There are still soft tissues which can be inflamed, but you are right to question the approach of steroid injections as they are not standard practice when a knee joint has been replaced with an implant. This is partly due to a higher rate of complications, such as infection. If you haven't had recent imaging (such as X-rays, a bone scan or MRI with metal artifact reduction), that should come first, looking for any evidence the pain is due to the implant failing or being loose, infected or malpositioned. Some of the other common causes of pain following a total knee replacement include scar tissue, soft-tissue inflammation, nerve entrapment or complex reg-ional pain syndrome. I'd advise you to ask some specific questions before having a steroid injection, such as, 'What is the specific diagnosis for my pain?' or, 'Is this pain mechanical, inflammatory, neuropathic or possibly related to implant failure?' and, 'What exactly are you injecting, and into what structure?'. Don't accept vague answers, such as talk of generalised inflammation. I'd advise asking to be referred back to the team who did your operation, or consider getting a second opinion from a revision knee specialist (an orthopaedic surgeon who focuses on failed joint replacements). There may well be long wait times, but this does not mean you shouldn't get referred. Advocate for yourself or bring someone with you to help ask the hard questions.
The Sun
a day ago
- The Sun
Why does my pee smell so foul? It's the worst smell ever!
A YEAR ago I had a health scare that landed me in hospital – and I spoke about it last week on Loose Doctors, a one-off Loose Women special on ITV. On a weekend trip with friends, after a swim in the sea, I noticed my heart rate was really fast. 4 It eased a little for a few hours before another attack in the evening, and I was taken to A&E. For the first time in my life, I thought I could die. My heart rate reached 300 beats per minute (compared to a normal of 60 to 100) due to something called atrial flutter, which can lead to a stroke or heart attack. I was just unlucky because my heart is healthy. But it gave me a new perspective on what matters and I'm even kinder to my body. We think of heart issues as a male problem, but it's a leading killer of women. It's important to be vigilant about your health. Make sure you take the free NHS health check offered every five years from the age of 40, which can spot risky conditions. Meanwhile, here's a selection of what readers asked me this week . . . WHY DOES MY PEE STINK? Life-saving NHS health checks to spot killer diseases will be carried out at work Q: I'M a 73-year-old man and my urine must be the worst smell ever. It's so foul. I have a dodgy kidney that works at only half the rate it's meant to and I've suffered with numerous urine infections. They clear up with antibiotics but, after a few weeks, come back along with the foul smell. I've also been clear of prostate cancer for five years. A: It sounds like you've really been through a lot, health-wise. I'm glad to hear that your prostate cancer is now in remission, but I do understand how frustrating and worrying these ongoing urinary issues must be. A very foul-smelling urine can be an indicator of an underlying health issue. It can be caused by infection, kidney problems or issues with waste product build-up in the body. Your history of a dodgy kidney that functions at half its capacity is a key piece of information. Some types of kidney problems can increase the risk of UTIs, especially those that interrupt the normal flow of urine from the kidney to the bladder, such as kidney stones which can lead to stagnant urine in the system, where bacteria is more able to grow. Have you had a recent scan to assess your kidneys, and have you been assessed by either a urologist or nephrologist (kidney specialist)? This is important, as it is crucial to find out if there are any potential blockages. An enlarged prostate gland can also stagnate the flow of urine as it leaves the bladder, and some of the treatments for prostate cancer can also cause issues. It's important to keep treating each infection, and to stay well hydrated and not delay passing urine when you get the urge (as much as possible). But if these measures alone are not working, then there are also treatments to prevent further infections that you should explore with your specialist team. Prophylactic antibiotics are a daily low dose of medication that can reduce UTIs. Methenamine hippurate is an alternative to daily antibiotic prophylaxis for recurrent UTI in men, which has quite recently been added to the NICE guidelines. I hope this helps to guide your conversations with your healthcare team – and please do let me know how you get on. IS PREDIABETES CAUSE OF FOOT PAIN? Q: CAN you tell me what is causing the pain in the soles of my feet after walking for about two hours? Could it be because I was diagnosed with prediabetes? 4 A: This could be caused by several factors and, while prediabetes can be related, it's not the most likely cause in this scenario – when pain comes on after a significant amount of walking. Higher up the list would be footwear issues, plantar fasciitis or muscle fatigue. Worn-out or unsupportive shoes can lead to poor shock absorption and pressure on foot muscles and ligaments, so opt for shoes or trainers that are well-cushioned and supportive. Flat feet or high arches can exacerbate the issue. So if you have either of these you may benefit from being assessed by a podiatrist, for orthopaedic insoles for long walks. Plantar fasciitis typically causes sharp heel or arch pain that is made worse by prolonged standing or walking. It's caused by overuse or strain of the plantar fascia (a ligament on the sole of the foot). Walking for more than two hours, especially on hard surfaces, can cause muscular fatigue in the feet, particularly if you're not used to that level of activity. So if the walking is a new activity for you, you may need to scale back initially. But I hate advising people to do less activity, so try to increase the pace of the walking you do. Essentially, a shorter but faster walk, and then build distance gradually as the muscles in your feet get stronger. Do some stretching and strengthening exercises for your feet – there are good NHS videos on YouTube for this. It is possible to get nerve damage with prediabetes – this is called 'impaired glucose tolerance neuropathy', which is damage that can begin even before full-blown diabetes. But this would typically be described as tingling, burning, numbness or pins-and-needles. Also, it is often worse at night-time, rather than after activity. BOOK A MIDWIFE ONLINE PREGNANT women can now see a midwife 'at the touch of a button', it was announced today. They can book their first midwifery appointment via bypassing the GP. Traditionally, expectant mothers would see their GP to tell them they are pregnant before a referral to midwifery services. But only 62 per cent of the first 'vital' appointments happen within the first ten weeks of pregnancy, health officials say. NHS England said it is estimated the new service could lead to 180,000 fewer calls to GPs and up to 30,000 fewer GP appointments each year. Officials stressed that women can still go in to see a doctor if they would like, for example, to discuss management of a long-term health condition. Kate Brintworth, NHS chief midwife, said: 'Making this process simpler at the touch of a button is a vital step in empowering women to take control of their pregnancy journey right from the very start and improving access to timely, personalised care.' Health and Social Care Secretary Wes Streeting said: 'Early pregnancy should be about joy and excitement – not wrestling with NHS bureaucracy to book a midwife appointment. 'That's why we've overhauled the online referral system. "No more endless phone calls or form-filling. "Just a simple online service that lets you book those crucial first appointments with a few clicks.' SOUNDS LIKE CANCER… THE early signs of cancer could be detected from your voice, scientists say. Using AI, subtle changes in vocal acoustics helped pick up lesions in people diagnosed with voice box cancer. Researchers believe AI could be trained to hear these changes within a 'couple of years'. There are around 2,000 new cases of voice box (laryngeal) cancer in the UK each year. A hoarse voice for more than three weeks can be a key symptom, and should be investigated by a GP. Using AI for diagnosis could spell the end of uncomfortable tests, such as a biopsy or nasendoscopy, in which a thin tube with a camera is passed through the nose down the back of the throat. The US team, part of the Bridge2AI-Voice project, gathered voice recordings of 300 patients, some of whom had voice box cancer. They study, published in the journal Frontiers In Digital Health, found 'marked' differences between men with and without cancer or a voice box disorder, such as nodules or polyps, specifically with the harmonic-to-noise ratio. It's possible the same will be found for women, with a larger data set. Dr Philip Jenkins, of Oregon Health & Science University, co-authored the study. He said: 'Voice-based health tools are already being piloted. 'I estimate that with larger data sets and clinical validation, similar tools to detect vocal fold lesions might enter pilot testing in the next couple of years.' Q: HAD a total knee replacement nearly seven years ago and have been in constant pain since. At my last consultant appointment, it was suggested that I have steroid injections in my knee. 4 But as I had a complete knee replacement, what would they inject into? I feel like I'm just being messed around. A: I'm really sorry to hear you're still in pain. It's understandable to feel frustrated and even suspicious when treatments don't make sense. When you have a total knee replacement, the joint surfaces are replaced with metal and plastic components, so there's technically no longer any cartilage or traditional joint space like in a natural knee. There are still soft tissues which can be inflamed, but you are right to question the approach of steroid injections as they are not standard practice when a knee joint has been replaced with an implant. This is partly due to a higher rate of complications, such as infection. If you haven't had recent imaging (such as X-rays, a bone scan or MRI with metal artifact reduction), that should come first, looking for any evidence the pain is due to the implant failing or being loose, infected or malpositioned. Some of the other common causes of pain following a total knee replacement include scar tissue, soft-tissue inflammation, nerve entrapment or complex reg-ional pain syndrome. I'd advise you to ask some specific questions before having a steroid injection, such as, 'What is the specific diagnosis for my pain?' or, 'Is this pain mechanical, inflammatory, neuropathic or possibly related to implant failure?' and, 'What exactly are you injecting, and into what structure?'. Don't accept vague answers, such as talk of generalised inflammation. I'd advise asking to be referred back to the team who did your operation, or consider getting a second opinion from a revision knee specialist (an orthopaedic surgeon who focuses on failed joint replacements). There may well be long wait times, but this does not mean you shouldn't get referred.
