RALEIGH – Parks and natural spaces development is an important element of a growing city, and a local nonprofit is working to aid in that effort.
The City of Oaks Foundation, started in 2009, is a private nonprofit that works with the Raleigh Parks, Recreation and Cultural Resources Department.
“We have a mission of trying to get people outside and active,” said Chris Heagarty, executive director of the foundation. “Raleigh has wonderful green space. Visitors to Raleigh always comment on the amount of trees, the parks, everything we have here.”
Heagarty’s job, and the foundation’s mission is to work to aid the city with parks-related project as well as create original programming for nature-related education and experiences. While City of Oaks works with a variety of city staff from parks around the city, Heagarty points to the recently renovated Sassafras All Children’s Playground in the northern portion of the city.
“That’s a park that we will help to raise awareness about, program, and get more people to know about the Sassafras story” Heagarty said. The foundation also works with other city parks to aid in summer camp planning for children. Raleigh strives to have affordable summer camp programs throughout the city.
The City of Oaks Foundation also hosts events at the Joslin Garden, a 4.5-acre tract of land donated for public use. Part of Heagarty’s job is developing the garden, and the house that sits on the property, to make it a space available for visitors. The property will not be fully accessible, Heagarty said, because doing so would necessitate the destruction of some of the trails, natural plants, and other facets that make up the garden.
“What we want to do, then, is concentrate and say ‘if 100 percent of the property isn’t accessible, what can we do to make as much of it accessible as we can?,’” he said.
Looking forward, there are plans to create some low-grade areas accessible to people with mobility challenges to see the trellises and topiaries nearer the front of the property.
One principle Heagarty keeps in mind is to notify participants if portions of an event may not be accessible to everyone. That gives people advanced notice to make plans, which he said is something advocates for and within the disabled have shared is beneficial in planning.
“When we host events at a site without full accessibility, we think it’s our obligation to make that known on the front end,” he said.
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RALEIGH – In this growing city, the needs of people with disabilities can be overlooked, prompting leaders in the disability rights community to demonstrate mobility needs.
Wake County, and its county seat Raleigh, North Carolina, is one of the fastest-growing areas in the United States. Growing more than 9 percent over the most recent decade, the city’s sprawl is poised to continue as increasing numbers of large tech and pharmaceutical companies locate their headquarters in the area.
“Our top three needs are housing, transportation, and employment,” said James Benton, who serves as the chairperson of the Mayor’s Committee on People with Disabilities. Benton said the transportation and public access issues are vital to the disabled community’s ability to partake fully in city life.
This issue came to a head in March 2016 when a driver in a growing section of town hit and killed a man in a wheelchair who was crossing the street.
Alexander Rhoades, a middle-schooler who lives in Raleigh with his family gained a new perspective on getting around when he developed a medical condition requiring frequent use of mobility aids.
Brian Rhoades, his father, said navigating the city using wheelchairs has been a learning experience. "We can manage, but it's been eye-opening to see what it's like and what places are difficult to travel with the chair. Our family likes to go to downtown events, but we have to avoid some of them."
“Sometimes, it’s okay, and I can get around if I have people to help me,” he said. “But sometimes it’s really hard. Like when I’m trying to see something that everyone else can see or if my wheelchair gets stuck.”
The City of Raleigh's response to sidewalk accessibility concerns has been to open a portal for residents to request sidewalk repairs. While the program works largely with residential areas, some downtown streets are included in the request plan. Residents ask for sidewalk construction or repair, and the city uses a formula to prioritize that repair, but there is no guarantee of the timeliness of the work.
For the Rhoades family, even attending family outings can be difficult. Pullen Park, a destination park in Raleigh that draws more than 1 million visitors per year, has added heavy-duty fencing around the park's water amenities.
"It is to keep people safe, but now I can't see anything," said Alex. "Plus, it's harder to get around the rest of the park sometimes."
The city's efforts to address this issue include the aforementioned Mayor's Committee, which meets monthly to discuss issues facing city residents with disabilities. The city employs a staff to address accessibility concerns and is working to make its public transportation system more accommodating.
As for Alex, he agrees that all is not bad. "People offer to help me, and I can still enjoy doing things with my family, even if it's a little harder sometimes."
MCLEAN, VA – New diagnostic criteria for Ehlers-Danlos Syndromes (EDS), also called EDS or simply Ehlers-Danlos Syndrome, released in early 2017, give physicians clearer and more concise criteria by which to identify EDS patients than previously available.
The illness actually is a “group of connective tissue disorders that can be inherited and are varied in both how they affect the body and in their genetic causes,” according to the Ehlers-Danlos Society, a Virginia-based nonprofit aimed at raising awareness and educating patients on EDS.
In the United States, the National Institutes of Health (NIH) defines a “rare disease” as one that impacts “fewer than 200,000 Americans.” The definition of rare diseases in the United Kingdom, where significant research is being done on EDS, is an illness that afflicts no more than 50,000 people living there.
The average person with any rare disorder sought a diagnosis for 4.8 years, according to Shire, a leading biotechnology research group focusing on treatments for rare diseases.
Claire Smith, author of Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, said that EDS patients often are well-versed on their illness because they have to be. “The concept of the ‘expert patient’ is perhaps nowhere better developed than in the hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder community. However, trying to navigate the sheer volume of material available can lead to information overload.”
“I’ve had EDS symptoms since childhood with my first true dislocation at age 24,” said Farrah Baynes, a former nurse who is now a patient advocate for people with EDS and related illnesses. “I initially was incorrectly diagnosed.” Baynes received an EDS diagnosis at age 33.
“I was officially diagnosed with EDS about three years ago,” said Teri Sews, of Raleigh, NC, who has the hypermobility sub-type of EDS.
“I was diagnosed by accident,” Sews explained. “Four days in the cardiac unit while they tried to figure out what was going on because it was not a heart attack, and I was not stable. It took three weeks to get a diagnosis. Again, this is super-fast compared to most people.”
In fact, Shire reports that people with rare illnesses see an average of 7.3 doctors before they receive an accurate diagnosis. In fact, researchers in Germany have reported a mean time of six years for diagnosis and indicate that most patients receive multiple incorrect diagnoses during that time.
“The route to diagnosis may depend on many factors, including the patient’s [general practitioner’s] own knowledge of heritable disorders of connective tissue,” said Smith, who works as a Partnership Director at the Hypermobility Syndrome Association.
Part of this difficulty is that disease like EDS span various body systems. The new criteria – called nosology in medical literature – includes a range of symptoms, including the hypermobility (or over-flexibility of joints), hyperextension of the skin, easily-scarring skin, abnormal wound healing, carotid spasms, delayed motor development, and rectal prolapse. While the NIH did not create the diagnostic criteria, they support its use.
These symptoms include problems with various body systems, resulting in the need for clarified diagnostic criteria, according to the Ehlers-Danlos Society.
“The specialist thing keeps a lot of people from being diagnosed,” Sews said. “You have to find someone who looks at the whole picture, which is not easy to do.”
The Ehlers-Danlos Society is the pre-eminent organization in the nation aimed at addressing this specific illness. The society currently partners with the Greater Baltimore Medical Center’s genetic institute to help improve research and patient care for EDS. The institute provides resources to patients, including listings of providers and support groups around the country and free research information for patients and their parents.
“Many doctors are intimidated by a patient who is active in their care,” Baynes said of her experience. “We all should work to educate ourselves about rare disorders because rarely diagnosed doesn’t necessarily mean rare.”
The goal is to aid patients and family members of people with Ehlers-Danlos. “While there is no cure for the Ehlers-Danlos syndromes,” the organization’s website proclaims, “there is treatment for symptoms, and there are preventable measures that are helpful for most.”
That understanding is key for Sews in talking to other people about the illness.
“Some things can’t be fixed,” she said. “We live in an age of incredible medical advances. I think people assume doctors can fix everything. No one has a perfect life. We all have things to handle, and this is mine.”
I'm a recovering journalist now living a Renaissance life working as a writer & political strategist. I also am the mom to 2 children, one of whom has autonomic dysfunction & Hypermobility Spectrum Disorder, I write about politics and healthcare in North Carolina.