Latest news with #Marfan
The Star
29-05-2025
- Business
- The Star
24 Malaysian OKUs to showcase their skills at MAB's Entrepreneurs Day event
Blind crafter Saravanan Velayuthan is adept at weaving and basic woodworking, and has been using his crafting skills to eke out a living for the last 25 years. The 54-year old's specialty lies in making nylon-woven footstools, stools and tables. "Weaving isn't difficult. Anything is easy if you have the interest," says the affable Saravanan during an interview at the Malaysian Association for the Blind (MAB) in Brickfields, Kuala Lumpur recently. Despite being blind and living with Marfan syndrome, Saravanan has spent 25 years perfecting his craft. Photo: The Star/Sheela Chandran There, he was completing a few woven stools, all of which will be displayed at MAB's Entrepreneurs Day, taking place from May 31 - June 1 (10.30am - 4.30pm) at MAB, KL. The objectives of the event include enhancing entrepreneurship and employability among persons with disabilities (OKU) and boosting their confidence to compete in the open market. A total of 24 entrepreneurs – from the visually impaired, physically disabled, deaf and those with intellectual disabilities – will be taking part in the event. Many items will be on sale, including handcrafted and homemade products made by the OKU individuals such as handicrafts, food, beverages, snacks, light meals, accessories and personal care products. And let's not forget Saravanan's woven stools, made using different weaving techniques like checkered weave, diagonal weave and honeycomb weave. Events like these mean a lot to the disabled community as they offer a chance to showcase their talents and earn some extra income. Often, this group of individuals isn't given the opportunity to shine due to a lack of support or exposure. Saravanan's stools are reasonably priced, ranging from RM130 to RM160 each. It takes him about two days to weave the design and make a stool. "About 98% of the work is handmade. Everything is done by my hands except for the thermo-treated meranti wood. This wood undergoes a heating process, making it stronger. I live in Shah Alam, and my son has to drive me to Kajang, Selangor to buy the wood from a sawmill factory," says Johor-born Saravanan, adding that one roll of nylon thread costs about RM15. Each handcrafted stool takes Saravanan two days to complete, using different weaving techniques. Photo: The Star/Sheela Chandran Yet some of his customers complain that the stools are too expensive. "Many people tend to bargain and ask for a cheaper price. It takes time to make the stool and complete the weaving, and I am blind," says Saravanan, who uses counting methods and his tactile skills to guide him through the weaving process. Saravanan also has Marfan syndrome, a genetic disorder that affects connective tissues. The disorder caused him to have problems with his eyes, which eventually led to blindness in his late 20s. Prior to that, he worked as a lorry driver, and he says he is blessed to have been able to see the face of his youngest daughter until she was five. After becoming blind, he signed up for a crafting course offered by MAB. From there, he eventually worked as a woodworking trainer for MAB for several years until MAB closed down its woodworking workshops due to low response from the blind. Today, Saravanan works from his flat in Taman Alam Megah. In a month, he can make five to 10 stools, earning between RM650 and RM1,600. It is not much but he's grateful three of his four grown-up children are already independent and earning an income. A pillar of support, Devayani (right) assists her father with his work, from painting stools to handling logistics. His eldest daughter Devayani, 25, works as a Braille publishing clerk with MAB. His kids assist him with his work, from painting stools to handling logistics. "When the kids were younger, it was very difficult to make ends meet as I was the sole breadwinner. Thankfully the Social Welfare Department gives me some money each month," he says. After mastering the art of nylon weaving, Saravanan now hopes to create opportunities for other visually impaired crafters. It is his dream to eventually have a small space where he can make his goods, and eventually train more blind people to weave. He is keen on Brickfields because it is easy for him to travel by train there, and that's the place where many from the blind community are based. "I dream of opening a workshop where I can teach and give jobs to other blind crafters so they, too, can earn an income. But without a proper space and with so few orders, how can I help them? "I'd love to explore weaving different surfaces like shoe racks. I can also weave traditional Indian beds called charpai. "But I live in a flat - there's no room to work. It's always difficult to craft these things at home, with my neighbours complaining whenever I do drilling work. "Hopefully my dreams will come true one day," he says.
Los Angeles Times
09-05-2025
- Entertainment
- Los Angeles Times
Newport Harbor grad who had Broadway wish granted, continues moving forward
Gabriella Earnhart attacks life with vibrancy. She describes herself well in a single sentence: 'I'm constantly creating something in whatever capacity I can.' Her home in Costa Mesa is close to her alma mater, Newport Harbor High School, where Earnhart works as a brand and community coordinator for the performing arts program she participated in before graduating in 2023. Earnhart faces a threat that's not always outwardly apparent, Marfan syndrome, a genetic disorder that affects the connective tissue all over her body. The 6-foot-1 Earnhart has an enlarged aorta, and the syndrome leaves her at increased risk for emergencies such as her lungs collapsing or retinas detaching. She sometimes needs to use a wheelchair to get around. 'I'd say that probably the most pervasive aspect of the illness is just chronic pain and chronic fatigue,' said Earnhart, 20, who had spinal surgery in 2018 for scoliosis that is often associated with Marfan syndrome patients. 'Something always hurts all the time.' Still, Earnhart tends to look on the positive side of life. She has met some of her best friends through nonprofit the Marfan Foundation. Her family moved from Chicago to Orange County when her father, David, got a new job while Gabriella was in high school. Settling into her new surroundings, Earnhart started seeing David Liang, a Hoag Hospital doctor who specializes in treating Marfan syndrome. Liang recommended her for Make-A-Wish Orange County and the Inland Empire. Her wish itself wasn't very specific. 'I wanted something where I could travel to a cool place, and I wanted something that is theater related,' Earnhart said. 'Something that I can dress up and enjoy the fun things.' The theater kid's wish was granted by Make-A-Wish in June 2024. Earnhart and her mother, Heather, were treated to a trip to Broadway. The reveal was special to her, as it happened in front of the bell tower on campus as she was preparing to direct junior actors in a production of 'Alice In Wonderland.' Her mom, coworkers, high school students and theater camp kids were all present. 'That was the first time in my life that I've ever actually been surprised by something,' she said. 'I was not expecting it all. It was a beautiful moment. Sometimes the kids will run into me at the grocery store and they're like, 'Miss Gabriella! I remember when we had cupcakes for your wish!' It's fun to have those memories in that place.' She saw two musicals on the New York trip, 'Merrily We Roll Along' and 'The Great Gatsby.' Earnhart also got to attend a theater awards show, plus the after-party. 'We just had the best time going to the Met, trying new restaurants [and] shopping for jewelry for the awards show at midnight in Times Square,' she said. She remains involved with Make-A-Wish. Earnhart spoke at the foundation's 'It's In The Bag' fashion show and luncheon, held April 27 at the Waterfront Resort in Huntington Beach. 'It really is inspiring to see how our wish kids take so many challenges and turn them into positives, and to see how the wishes that we grant really have an impact on the trajectory of where their future takes them,' said Anne Grey, Make-A-Wish Orange County and the Inland Empire's president and chief executive. 'It gives them the feeling that anything is possible. It's so wonderful, and Gabby really embodies that, which I think is amazing.' Though Make-A-Wish is often associated with children with terminal illnesses, Grey said about 70% of the organization's kids live on to adulthood. 'What can be so deceiving is that they can look healthy on the outside by all appearances, but the highs and lows of dealing with a critical illness throughout your life do have those valleys where it's really a struggle,' she said. 'Having the ability to look forward to a wish or look back on your wish, how that was a great time, getting through the hard times and staying strong is something that a wish makes possible.' Earnhart, who has taken two gap years since graduating from high school, has focused on working both at Newport Harbor and the Sunflower Design Co., a hand-lettering and painting business. She is now taking the next step, leaving Newport Harbor and enrolling at Pepperdine University, where she'll start studying musical theater and marketing in the fall. She knows that her Marfan syndrome will likely affect her life in the performing space, but she's still making that choice to pursue the arts. Experiencing her Broadway wish come true no doubt gave her inspiration. 'It was just really lovely to be able to combine the arts and this wish,' Earnhart said. 'It felt like a very culminating moment for me.'
The Hindu
01-05-2025
- Health
- The Hindu
All you need to know about: Marfan Syndrome
What is Marfan Syndrome? Marfan Syndrome is a rare genetic condition that affects the body's connective tissue, the material that supports and holds together skin, bones, blood vessels, and organs. When this tissue is weak or stretched, it can cause a wide range of health issues, especially in the heart, eyes, bones, and joints. The condition is named after French doctor Antoine Marfan, who first described it in 1896. What are the signs and symptoms of Marfan syndrome? People with Marfan Syndrome often have a tall and thin build, with long arms, legs, fingers, and toes. Their joints may be unusually flexible, and they often have loose ligaments, meaning their fingers may bend back farther than normal, sometimes even touching the back of their hand. Some may have a curved spine or a chest that sticks out or sinks in. The condition also affects the eyes, often causing the lens inside the eye to slip out of place, known as lens dislocation, which can lead to serious vision problems if not treated in time. The most serious complications involve the heart and major blood vessels. The walls of the aorta (the main artery carrying blood from the heart) can become weak and stretch too much, leading to aneurysms or aortic dissection, both of which can be life-threatening. Some people also have mitral valve prolapse, where a valve in the heart does not close properly. Also Read: Telangana govt hospital doctors perform liver transplantation on patient suffering from Marfan's and rare syndrome Who is at risk? Marfan Syndrome affects about 1 in 10,000 people. It is usually inherited from a parent, but in some cases, it can occur as a new genetic change without a family history. The risk is higher in consanguineous marriages (where partners are closely related), because the chances of passing on certain genetic traits are greater. Some doctors have suggested that Abraham Lincoln, the 16th President of the United States, may have had features of Marfan Syndrome, such as his tall stature and long limbs. Both men and women are equally affected. How is it diagnosed and treated? Marfan Syndrome is diagnosed based on physical signs, eye exams, heart scans like echocardiograms, and genetic testing. Since the symptoms vary and may develop slowly, diagnosis can be delayed unless doctors specifically look for it. There is no cure for Marfan Syndrome, but it can be managed effectively with the right medical care. Beta-blockers or blood pressure medications like propranolol are often prescribed to reduce stress on the heart and aorta. Regular cardiac checks help monitor the size of the aorta, and surgery may be needed if it becomes dangerously enlarged. Routine care also includes orthopaedic monitoring for bone or spine issues and regular eye check-ups to catch and treat lens dislocation early. Ignoring vision problems can lead to permanent eyesight loss, especially in children. Also Read: Cardiac surgeon calls for screening in schools for Marfan Syndrome What is life like with Marfan Syndrome? With proper precautions, most people with Marfan Syndrome can lead healthy and productive lives. However, they should avoid strenuous activities, contact sports, or heavy physical work, such as military training or physically demanding jobs which could stress the heart or joints. Regular check-ups with a cardiologist, ophthalmologist, and orthopaedic specialist are essential to monitor and manage the condition over time.
Gulf Today
27-04-2025
- Health
- Gulf Today
First intestine transplant performed in Indian state of Telangana
Hyderabad: The first successful intestine transplant in Telangana has been done by doctors at state government-run Osmania General Hospital. A 40-year-old male patient with short gut syndrome and on Total Parenteral Nutrition (TPN) support was admitted to Osmania Hospital, and found to have repeated central line infections and major central vein thrombosis. According to doctors, he underwent massive small bowel and right colon resection for massive gangrene due to acute Superior Mesenteric Artery (SMA) occlusion. Only 30 cm of the proximal jejunum, starting from the duodenojejunal (DJ) flexure, had remained intact. Doctors at Osmania Hospital performed a cadaver small intestine transplant on April 19. Doctors said that the patient is now tolerating a soft diet orally, and his ileostomy is functioning well. A protocol endoscopy performed on the seventh postoperative day revealed a healthy, pink mucosa in the transplanted bowel. Biopsy results confirmed there were no signs of rejection, doctors said. This came a few days after doctors at Osmania Hospital achieved a breakthrough by successfully performing a liver transplantation on a 14-year-old patient suffering from Marfan's syndrome and very severe hepatopulmonary syndrome (HPS). Marfan's syndrome is a genetic disorder that makes body tissues fragile and increases the risk of heart problems, while HPS is a rare and serious condition where liver disease leads to low oxygen levels and widening of blood vessels in the lungs, making it hard to breathe. A team of hepatologists, pulmonologists, cardiologists, and transplant surgeons at the hospital spent months evaluating the patient's condition before taking a decision to perform the transplantation despite the risks involved. A team of 30 doctors performed the surgery that lasted for 20 hours. Doctors had termed it a global milestone. Osmania Hospital is the oldest and one of the major government-run healthcare facilities in the state. Conceived after the devastating Musi floods of 1908, the Osmania Hospital was built by Mir Osman Ali Khan, the last Nizam of the princely state of Hyderabad, and named after him. Built in the Indo-Saracenic style, it was completed in 1919 and has been host to many prominent medical conferences and research initiatives over the last 100 years. Indo-Asian News Service
Hans India
27-04-2025
- Health
- Hans India
Telangana's first intestine transplant performed at Osmania Hospital
Hyderabad: The first successful intestine transplant in Telangana has been done by doctors at state government-run Osmania General Hospital here. A 40-year-old male patient with short gut syndrome and on Total Parenteral Nutrition (TPN) support was admitted to Osmania Hospital, and found to have repeated central line infections and major central vein thrombosis. According to doctors, he underwent massive small bowel and right colon resection for massive gangrene due to acute Superior Mesenteric Artery (SMA) occlusion. Only 30 cm of the proximal jejunum, starting from the duodenojejunal (DJ) flexure, had remained intact. Doctors at Osmania Hospital performed a cadaver small intestine transplant on April 19. Doctors said that the patient is now tolerating a soft diet orally, and his ileostomy is functioning well. A protocol endoscopy performed on the seventh postoperative day revealed a healthy, pink mucosa in the transplanted bowel. Biopsy results confirmed there were no signs of rejection, doctors said. This came a few days after doctors at Osmania Hospital achieved a breakthrough by successfully performing a liver transplantation on a 14-year-old patient suffering from Marfan's syndrome and very severe hepatopulmonary syndrome (HPS). Marfan's syndrome is a genetic disorder that makes body tissues fragile and increases the risk of heart problems, while HPS is a rare and serious condition where liver disease leads to low oxygen levels and widening of blood vessels in the lungs, making it hard to breathe. A team of hepatologists, pulmonologists, cardiologists, and transplant surgeons at the hospital spent months evaluating the patient's condition before taking a decision to perform the transplantation despite the risks involved. A team of 30 doctors performed the surgery that lasted for 20 hours. Doctors had termed it a global milestone. Osmania Hospital is the oldest and one of the major government-run healthcare facilities in the state. Conceived after the devastating Musi floods of 1908, the Osmania Hospital was built by Mir Osman Ali Khan, the last Nizam of the princely state of Hyderabad, and named after him. Built in the Indo-Saracenic style, it was completed in 1919 and has been host to many prominent medical conferences and research initiatives over the last 100 years.
