Latest news with #disabilityawareness
The Sun
28-05-2025
- General
- The Sun
I stink of rotting sewage but can't detect my own smell – I can't get a date, don't have any friends & avoid family dos
DESPITE showering daily, brushing her teeth and spraying perfume, Carmen Davies' rare disorder leaves her smelling like ROTTING SEWAGE - and it's so bad she even avoided a relative's funeral. The 29-year-old was diagnosed with trimethylaminuria (TMAU) back in June 2023. 5 5 Also known as fishy odour syndrome, the genetic disorder causes sufferers to emit a pungent scent that affects the breath, sweat and urine. Carmen says she will smell within minutes of eating certain foods - including fish and eggs - because her body is unable to break them down. Although Carmen can't notice the smell herself, she can see other people's reactions when she walks past. Carmen is unable to mask the odour - so she resorts to staying at home so as not to inflict the stench on anyone. She says the condition has stopped her from finding work and even prevented her from attending her cousin's funeral in 2023. Carmen says she tries not to take it personally when people notice how she smells, but often has to deal with people audibly questioning what the smell is. The mum-of-one, who is currently unemployed, from Fallowfield, Manchester, said: "I live my life having to stay away from people, and that's led to massive mental health issues. "Smelling like rotten fish, rotten eggs, urine and faeces is horrendous - it doesn't matter how much I wash. "I go out wanting to be cautious about other people and feeling guilty about myself standing next to someone. "I have a beautiful baby boy though and any issues from my condition have to be overcome. What your body odour can reveal about your health "He needs to be outside - so with having a child, I've had no other option to try and take myself out of my comfort zone at times. "It's a natural human reaction to go, 'Oh, what is that smell?' so I try not to take it personally, but it is really hard. "My aim is to try and explain it to other people. "It really has altered my way of life in every single way." 'Dating doesn't apply to me' Carmen has a young son from a past relationship but is currently single and says dating is not an option for her. Relationships these days are non-existent, including friendships. She explained: "It does affect relationships, as obviously you don't want to be around anyone with this smell. "I've accepted that I don't have that element of normal life. "I just live a different life from other people, so there are certain things like dating that don't apply to me. It's just too much of an issue for me. "Same for friendships. I don't have friends at all. I just stay with my child." The condition is caused by a mutation in the FM03 gene, which helps break down trimethylamine. Without it, the compound builds up, causing a fish-like odour. Playground bullies Carmen first realised she had started to smell when she was at college - with reports suggesting the disorder may become worse during puberty. She said: "It all started when I was about 18. "There was this one boy that told everybody that I smelled like poo - I thought it was strange, and just being malicious to me. "So I didn't take any notice of it, but then I started hearing indirect comments about me from other people - that I needed to have a bath and have a wash. "This guy then started to make songs about me on his YouTube channel - he'd nickname me 'poo-dle'. " Carmen eventually sought medical advice - though claims she was initially told it was a mental health- related issue. 5 5 According to Metabolic Support UK, only around 100 people in the UK have been identified with the condition, and it may be underdiagnosed and misdiagnosed. Carmen said: "They believed I had a condition where I could smell smells that weren't there - but I shower every morning and keep clean, so I went back to the doctors and said I was sure something was wrong. "I asked to be referred to a TMAU specialist centre - I was told it was really rare and that it was all in my head. "I wouldn't leave it and kept going back to doctors as I couldn't do anything without people commenting about how I smelt. "I eventually had an official diagnosis from my doctor in 2023. "You can only manage your symptoms by food - I have to avoid red meat, anything processed or frozen, green vegetables - you'll always have an odour. What is trimethylaminuria? Trimethylaminuria, also known as fish odour syndrome, is a metabolic disorder where the body is unable to effectively break down trimethylamine (TMA), a compound produced during the digestion of certain foods. This buildup of TMA results in a strong, fishy odour in breath, sweat, and urine. The condition occurs due to a problem with the FMO3 gene. The most noticeable symptom is a persistent fishy odour, which can be described as smelling like rotten or decaying fish. The intensity of the odour can vary, and some individuals may experience it more strongly during certain times, such as before or during menstruation, or when stressed. The odour can be present in the breath, sweat, urine, and vaginal fluids. There's no cure for the condition but there are several management strategies to help reduce the symptoms. These include dietary changes, medications, supplements, and adjustments to personal hygiene. People with the condition should avoid trimethylamine precursors. This includes seafood (especially shellfish and marine fish), eggs, beans, peas, peanuts, and liver. Activated charcoal can help absorb trimethylamine in the gut, and riboflavin (vitamin B2) might help enhance residual FMO3 enzyme activity in some individuals. Using acidic soaps and body lotions can help convert trimethylamine on the skin into a less volatile form. Short courses of antibiotics can help reduce the number of bacteria in the gut that produce trimethylamine. Some individuals may experience anxiety or depression related to trimethylaminuria, so it's important to seek mental health support. "Over the years, I've found that fasting makes you smell worse in the first seven days, but if you continue your fast, then your TMAU tends to smell like cinnamon. "It was working in the sense that I didn't smell like faeces and sewage, but I became too thin from not eating enough." 'Family gatherings are out' Carmen struggles daily with her condition and avoids family and social gatherings. She said: "I don't have any quality of life - I have to wake up and have this smell every day. "I did ballet, singing, and dancing when I was younger, and I'd do anything to be able to do that again. "Family gatherings are off bounds. "I lost my cousin, and I couldn't go to his funeral because of it - I really do sit in my house all the time. "I did meet someone on a TMAU forum online, and we completely understood each other - it's so hard to explain to other people, and I wish the world could be kinder about things."
CBC
26-05-2025
- Business
- CBC
A patio is blocking accessible parking in Belmont Village. Advocates say that's not fair
The patio of a Belmont Village restaurant is blocking an accessible parking spot, and that's raising questions about what people with physical disabilities may need to fully enjoy public spaces. Casa Rugantino is an Italian restaurant in the heart of Kitchener's Belmont Village. Their patio fences off one of the only accessible parking spots in all of Belmont Village, and that's not sitting right with resident Macie Anderson. Anderson doesn't have any accessibility needs herself, but she said she is a frequent visitor of the area with her family, and seeing the patio block the spot made her concerned. She noted that the parking spot has been blocked every summer since the beginning of the COVID-19 pandemic, when outdoor patios became a lifeline to restaurants needing distant spaces for their patrons. "We love the area, obviously love supporting local and we love the restaurant," Anderson said. When she realized the accessible space was being blocked off repeatedly during summer months, she spoke with the Casa Rugantino's owner and the city of Kitchener itself. Anderson said the owner, Shelly Trotta, told her that she was under the impression the city had taken care of the oversight. "[Trotta] assumed that because they gave them the permit and they allowed them to build the patio that the city was then going to add an additional accessible spot for the area somewhere else," Anderson said. CBC News reached out to the restaurant several times by phone and email but have not received a response. The city said that they had collaborated with the Belmont Village BIA board of members and determined that "the area remains well-served with parking." The city confirmed that Casa Rugantino operated its expanded patio on an outdoor patio permit that renews automatically unless a business informs the city of a change or discontinuation. They said Casa Rugantino was compliant with all city and legal standards. Anderson said that despite ample street-side parking in Belmont Village, designated accessible parking spots were few and far between. There are a total of three accessible spaces in the area, including the one being blocked. "It's not ideal and it's already a bit of a sore spot for the area just from going there a lot of times to the buildings myself," she said. She said she's seen many older residents grow frustrated over a lack of available parking that's designed specifically for people who need to be closer to places like medical buildings. "Belmont is such an inclusive small village that has been so good to the businesses in the area and the people... and then this glaring issue of completely disregarding anybody with an accessibility issue, I don't know, just stood out to me," she said. 'Double-edged sword' of accessibility Kitchener city officials say Casa Rugantino is well within its rights to expand its outdoor patio to the street-side parking, but some advocates are saying that situations like these are a give-and-take. Edward Faruzel is the executive director of KW AccessAbility, a non-profit dedicated to creating equal spaces for adults with physical disabilities in Waterloo region. "It's sort of a double-edged sword. If it's done right, it can be amazing because [outdoor patios] could open up a whole lot of extra accessible seating areas that might otherwise not be available to somebody in a wheelchair," he said. As a wheelchair user himself, Faruzel is aware of how difficult it can be to get safe, accessible street parking in the downtown cores of Kitchener and Waterloo to begin with. He said summertime is normally "the most important time for people with disabilities." "It's so much easier for people to get around... there's no snow, they don't have to bundle up," he said. Devin Sisak, the former chair of the Cambridge accessibility committee, agrees. His son uses a wheelchair and their family is very familiar with the parking situation in Belmont Village. He confirmed that there were only three accessible parking spots in the village. He said most outdoor patios tend to be better for mobility as long as they're not encroaching on safe parking. "We have a very limited number of accessible on-street parking in the region just because of safety. People are exiting their vehicles. So if you're driving and transferring to a mobility device, you'd be transferring into the edge of traffic just the same as an able-bodied driver," he said. That being said, he did say that the Accessibility for Ontarians with Disabilities Act (AODA) requires a temporary spot to be put in place of any accessible spot being taken away in order to maintain legal numbers. "It gets into percentages," Sisak said, adding regions are required to maintain a certain amount of accessible parking spaces based on already available parking and other considerations. He said there are most likely ways to designate new accessible parking spots in areas being blocked off by outdoor patios. Faruzel said a bigger concern might also be busy traffic areas of downtown cores in the region. He said that parking is so sparse on busy streets that it may be a better alternative to consider shutting down certain streets for ease of pedestrian mobility in general. Other barriers and moving forward Chantal Huinink is a lifelong disability advocate, a councillor for the Region of Waterloo and she sits on the Grand River Accessibility Advisory Committee (GRAAC). She said the biggest concern with accessible spots is making sure there's enough space for an accessible van to function if a wheelchair user is getting on and off. Summertime, she said, comes with a whole host of other accessibility considerations. "It's not just about parking spots. It's about sandwich boards, the sidewalk or flower beds that aren't there in the winter. If people are navigating and they're visually impaired, for example, there are all kinds of features to be aware of in the summer," she said. "This requires the attention of the municipality, it requires the attention of the region and it requires the attention of the province and enforcement of the AODA because that's a positive legislation meant to make Ontario accessible for everyone, but it's not enforced properly," she said.
BBC News
24-05-2025
- Health
- BBC News
Student 'so grateful' for life-changing support dog
A student who relies on walking aids due to a health condition said having her family pet trained as a support dog has changed her Riddick, 24, from Ashton Gate, Bristol, has Scheuermann's Kyphosis, an excessive curvature of the spine which left her needing a walking stick or wheelchair to move her condition worsened, Ms Riddick lost the confidence to go out alone, which led to her taking two years out of her forensic psychology degree at Bath Spa after her labrador Bleddyn was trained as a specialist disability dog by the National Support Dogs charity, she is back studying with Bleddyn by her side. Ms Riddick said she caught a train from Bristol to Chelmsford recently which is something she would "never have done" without Bleddyn by her side."I was very anxious previously [so] I would have just relied on lifts or driving myself," she she said was now "trying to get more out of my comfort zone" and having Bleddyn trained as a support dog had given her "a lot more confidence".Ms Riddick was born with Scheuermann's Kyphosis but wasn't diagnosed until 2012 after complaining about back pain from when she was was a competitive dancer and sporty before being told she needed surgery to avoid irreversible after an eight-hour thoracic spinal fusion surgery in 2019, her balance did not improve and she needed a walking got Bleddyn four years ago to help her through depression due to her condition, and was advised by a friend to look at getting him trained to support her, so she applied to Support Dogs in charity trains specialist assistance dogs to help children and adults with autism, epilepsy or a physical disability. In January this year, Ms Riddick suffered a fourth acute paralysis episode and was diagnosed with Functional Neurological Disorder (FND) which left her needing to use a wheelchair more she said she ass "so grateful" to have Bleddyn to help with dressing, opening and closing doors, and with washing and drying can also fetch her walking stick, keys and phone and he has an alert bark and can get help if she falls."I think it's incredible, the amount of people [Support Dogs] help [and] the amount of confidence it gives people with disabilities," she said. Scoliosis Support and Research says Scheuermann's kyphosis is a condition where the front sections of the vertebrae - the small bones that make up the spine - grow more slowly than the back usually present with it from about 10-16 years of age, and often experience back pain, especially during early teenage years.
Telegraph
19-05-2025
- Health
- Telegraph
I'm 33 and can barely stand up on a train. I'm proof ME is real
It's a Tuesday afternoon and, like many across the capital, I'm attempting to conquer the Tube at the end of a long working day. It's difficult enough for the average Londoner: figuring out whether you're going north or southbound, when you need to change, why there's yet another delay on the Central line. But there's another layer of stress for me – another 10 layers, in fact. I'm crammed onto the Tube platform and my body feels like it's failing me. I'm on the verge of passing out and physically cannot stand any more. It's a feeling which has become all-too common, but is just as terrifying each and every time. Visions of me splayed out across the grimy Tube platform spring to mind, until my train finally rolls in and a kind woman – spotting my hidden disabilities sunflower lanyard – offers me her seat. Yet another near miss. You might pass me on the street and not realise I'm disabled. But, I've got ME. Not chronic fatigue syndrome, or any of the other labels that seem to somehow diminish its seriousness. It's ME – myalgic encephalomyelitis. 'Myalgic' means muscle pain, 'encephalo' refers to the brain, and 'myelitis' is inflammation of the spinal cord. It affects every part of the body – fatigue is just one of many symptoms. It's taken years for me to get to the point where I can live what appears to be a 'normal' life; I'm not wheelchair-bound, I'm married, I can sometimes drive, and I manage a team as a senior underwriter for a leading insurer in London. It feels like I've tried every treatment under the sun in my attempt to get 'better'. The Fodmap diet, lymphatic drainage, Botox for migraines, reiki, vagus nerve stimulation, hypnotherapy for pain – the list goes on. It was the summer of 2015 when my life changed completely. I was in my early 20s and in the best shape of my life. However one day, I began to struggle with flu-like symptoms and decided to see a GP as they continued to worsen. She thrust a mental health questionnaire my way and sat during our appointment with her coat on, rushing me, clearly ready for the end of the day. So I soldiered on, with no diagnosis, continuing to feel more unwell. In November 2015, I was diagnosed with norovirus. However, whilst symptoms of the virus typically last for two to three days, I continued to feel ill for months and rapidly lost weight. I developed unexpected symptoms including migraines, eczema, night sweats and asthma, and I couldn't keep any liquid or food down. Luckily, I had private health insurance so I initially went down that route, going through all the tests and scans to rule out every possible cause. But to no avail. My symptoms continued to build throughout the year and I felt completely hopeless. I could no longer work so was on statutory sick pay and had to host a lodger to help pay my mortgage. At the time, I was quite new to my job so I was conscious about immediately being labelled 'the sick one'. However, it was a stigma I found I could no longer shake. I know there's this perception about people with chronic illnesses being lazy but the majority of people I've met with ME have been career-focused and 'go-getters'. At the time of my diagnosis, I was 23. My career was just starting, I'd just met my future husband, and I was active and sociable. After months of testing, I was no closer to an answer. It felt like my body was failing me and I didn't understand why. It was heartbreaking and I was ready to give up. However, I knew I couldn't – I went back to my NHS GP with my husband for support. That's when I finally received the validation and explanation I'd been desperately looking for. In March 2016, I was formally diagnosed with ME after months of further tests. Whilst the direct cause of ME is still unknown, it seems to be triggered by an infection, virus or illness. The symptoms overlap significantly with those of Lyme disease and long Covid. The GP sent me to Cossham Hospital where I began to work with an occupational therapist in July 2016. We focused on pacing, where you try to maintain the same energy levels throughout the day, every day. My FitBit has been great for that – it monitors my heat rate, my step count and my heart rate variability. I was also referred to group therapy sessions. They're a nice idea in principle. But I remember sitting in a stuffy hospital room for hours on a Tuesday afternoon with a group of people 'just like me'. We would talk about how ill we all are. Occasionally, someone would fall asleep or spill a drink. All I wanted was to not be there – I wanted was to get back to work, to a normal life, not spend hours discussing our mutual incurable condition. After attending two of those sessions in October 2016, I quickly made my thoughts heard. Graded exercise therapy (GET) was also recommended. Great, I thought. Before the illness I absolutely loved working out. In fact, I was an avid gym goer and met my husband there. I was told to 'keep persevering' because apparently exercise is what I needed to improve my symptoms. Yet, every time I felt well enough to exercise, I would relapse and end up back at square one, with post-exertional malaise (PEM). It made me feel like a failure and I finally accepted I just couldn't do it. After that, I didn't try again for eight years. As of 2021, GET is no longer officially offered as a treatment for ME – that tells you all you need to know. By that point, I just didn't feel heard; it's clear the NHS has a long way to go in its understanding and treatment of ME. That's when I decided to take matters into my own hands. I started my new job in September 2024 and was honest about my condition at the interview stage which meant we agreed upon a flexible working pattern. I work from home, but sometimes travel into the London office from Cheltenham, with the important caveat that it depends on careful planning, support and my symptoms. This works really well because I can use my non-working day to attend appointments. I love my job and they've been really great with the adjustments I've advocated for, but it's taken a long time to get here, after years of struggling with long hours, inflexible patterns and my confidence. The treatments that work best for me are red light therapy, massages, acupuncture and pacing. I prioritise a healthy diet and have a strong sleep routine too. I tend to eat little and often. My diet is varied and balanced – fish, chicken, and vegetables are nutritional staples. I prioritise protein and complex carbohydrates and try to avoid foods that release energy quickly, such as sugar and caffeine. Pacing throughout the day is key to maintaining energy levels. My bedtime schedule is strict to help me get at least eight hours of sleep each night. Before bed, I take amitriptyline and magnesium and I always have an Epsom salt bath to relax my muscles. I listen to brown noise (characterised by a deep rumbling sound, such as thunder or heavy rainfall) while sleeping to help reduce disturbances. All of these treatments help me to manage my symptoms, rather than provide a cure. Sometimes they work, sometimes they don't, and sometimes they actually make my symptoms worse. I was also recently diagnosed with ADHD which my therapist believes has played a part in my ability to keep pushing forward over the past 10 years. Both conditions are neurological – whilst my ME body wants to give up, my ADHD brain won't let it. I'm incredibly lucky that I have an amazing support system of family, friends and colleagues. So much of this journey is shaped by luck – where you live, who supports you, what you can afford. Some people with ME have sadly died whilst others are tube-fed or permanently wheelchair-bound, unable to work at all. Many don't have the resources to trial alternative therapies or seek specialist care. Now, I'm in a place where I can work, see friends and even have weeks where I can attempt a workout at the gym – but I'm far from cured. It's when I'm asked to be a bridesmaid, and find myself thinking about all the adjustments I'll need just to make it to the hen do. Or when I see people my age having children and wonder if that's even possible for me. There's still a long way to go in improving awareness around and treatment of invisible illnesses such as ME but it's starting to get better. Sometimes, I feel like a fraud because I look 'normal'. But I know I'm unlikely to ever recover and that's scary. For those who resonate with my story, just know that it's possible to rebuild a life that works for you. It takes time, adjustments, and self-advocacy, but small changes can make a big difference. Once you have grieved your old self, try to focus on what's still possible. Life might be very different, but it can still hold purpose, joy, and connection. Living with ME has taken so much from me, but it's also taught me to truly listen to my body and fight for my needs.
CBS News
19-05-2025
- Politics
- CBS News
2 bills aimed at banning offensive, discriminatory mascots at Illinois schools stalls in State Senate
Two bills aimed at mascots in Illinois high schools have temporarily stalled in the state's senate, but lawmakers say the legislation likely isn't going away anytime soon. One of those bills includes to ban the use of Native American mascots and imagery while the other wants to ban the use of discriminatory disability mascots. Some state house lawmakers expressed concerns over cost to local school districts, like downstate Freeburg. According to the high school's website, its athletic teen has been as the "Mighty Midgets" since the 1930's. "The team is named because of history. because of what went on there and so that's honoring them," Rep. Charlie Meier said "You could be playing another individual at another school who has dwarfism and imagine what that student feels when you are chanting your mascot," Co-director of Mascot's Matter Shelby Holloway said. an extension has been requested for the bill banning the use of discriminatory disability mascots... in hopes to assign it to committee before the end of session.
