Living with a rare illness, particularly one that has been named for only 25 years, can be a challenge. Family members, educators, and even medical professionals are sometimes unfamiliar with the illness, pushing the patient to learn how to manage sometimes without expert help. POTS, Postural Orthostatic Tachycardia Syndrome, is one such disease.
POTS is a form of dysautonomia, itself an umbrella term for a range of conditions related to malfunctioning autonomic nervous system process. The symptoms of POTS include blood pressure decreases, heart rate increases, lightheadedness, fatigue, and other sometimes overlapping symptoms.
A recent book Power over POTS, written by Dr. Scheldon Kress, addresses this condition. Kress has 30 years of experience as an internist but was unaware of POTS until his grandson received this diagnosis. His book is intended to aid people who are struggling to live with this condition. A 2010 article in the Journal of Pediatrics argued that because the first pediatric case of POTS was not identified until 1999, there is not enough information available to diagnose and manage this illness effectively. The article’s author argues that the goal should be to have controlled clinical trials to help provide data on the topic.
While Kress’ book is not a clinical trial, it does have the benefit of being written by someone who has a medical degree and who has personal experience with managing the disease. If you or someone you know is dealing with POTS, this book is a must-read to help with lifestyle alterations to manage this debilitating illness.
Standing Up to POTS
RALEIGH – A successful inaugural event has organizers of a suicide and grief awareness festival hoping that they can educate the public on this issue.
Jessica Rivera of JRV Consulting in Raleigh is a grief and loss life coach. She worked to bring the Shine a Light Family Day Festival to the North Carolina State Fairgrounds in Raleigh on September 9th.
“It is something that we are seeing more with younger and younger kids,” Rivera said. She said that suicidal attempts and suicides are increasing in both teens and younger children. Rivera puts much of the blame on access to social media because children are unable to escape scathing comments and bullying that comes their way.
Some of those children like Alex Rhoades of Raleigh, have clinically diagnosed health conditions. "I have a lot of diagnoses," Rhoades explained. "I have EDS, or Ehlers-Danlos Syndrome. It makes my joints hurt and pop out of place a lot. I also have some GI tract issues that aren't really diagnosed yet. And then all of that led to me being depressed."
The goal of the event, which drew several hundred people, was to let people know that they should be cognizant of suicidal ideation in their children, Rivera said.
“Grief isn't only about the loss of life,” Rivera said. “Instead grief can be from a major life event, from bullying, or from losing friends as children hit adolescence.”
Rivera suggested that parents keep a close eye on what is going on with their children's lives and that they seek out services from professionals if they notice their children withdrawing from family or friends or activities that they previously enjoyed.
"I did talk to my mom when I felt suicidal," Rhoades explained. "She talked to me and then got help for me so that I take medication and work on trying to handle my problems."
“When [my business gets] those calls,” Rivera said, “we try to work with the family to address whatever is going on. Sometimes we have found that children are unable to tell their parents about their concerns, but they will open up to someone else in a safe supportive environment.”
Rivera said that the idea for the festival came because of an increase in the number of calls that her service received about suicide related issues.
Rivera is hoping that through events like Shine a Light Family Fun Day, she can help to remove the stigma of talking about this important issue from her local community.
This piece is a follow-up on clean water issues discussed in August 2017.
DURHAM – Clean water activists are working to address lingering problems from decades of improper coal ash disposal.
Clean Water of North Carolina is one organization working to address the mounting problems from the use of coal ash by Duke Energy. The Coal Ash Management Act, passed in 2014, requires Duke Energy to build better disposal sites for future coal ash disposal. Coal ash is the natural by-product of electricity production, and long-term surface disposal throughout the state resulted in spills, such as the massive Dan River spill in February 2014, according to the Environmental Protection Agency (EPA).
“Besides hexavalent chromium, also in coal ash is arsenic and vanadium and other contaminants,” said Erica Faircloth, Water and Energy Justice Organizer for Clean Water for North Carolina.
In 2017, the number of clean water issues that have cropped up has risen. While coal ash remains an important issue, GenX and surface water runoff also take the attention of activists like Faircloth.
“Where the [Atlantic Coast] pipeline [for natural gas harvesting] is going will be through a ton of wetlands,” Faircloth said. “When you damage wetlands, really you damage nature’s free way of filtering out your water. Why would we damage something that does something very important for us for free?”
While water activists like Faircloth are working on all of these issues, coal ash maintains its position at the front of the line. In early October, the Southern Environmental Law Center sent notice to Duke Energy on behalf of other organizations a notice of intent to sue for violations of the Clean Water Act related to coal ash dumping in Stokes County, North Carolina.
“These lined ponds [required by the CAMA of 2014] are really just a temporary fix,” Faircloth explained. She believes that more will need to be done in the future to address this issue.
RALEIGH – More than 250 people attended the third annual AIDS Walk & 5K Run this weekend in an effort to increase money available for related programs.
This event, led by the Alliance of AIDS Services – Carolinas (AAS-C), took place at Dorothea Dix Park where individuals, business teams, families and even dogs participated in the event, helping to raise an estimated $50,000.
In addition to AAS-C, the North Carolina AIDS Action Network (NCAAN), LGBT Center of Raleigh and Crape Myrtle Festival assist in planning this event. Each organization receives a share of the proceeds although AAS-C takes home the lion’s share based on their status as the event lead, said AAS-C Executive Director Hector Salgado.
This year’s event almost doubled the 2016 run’s participation when 137 runners registered.
“The collaboration is really good, and we’ve also done some fine tuning,” Salgado said. “We were able to start planning earlier this year and have had a good group of people working on the event.”
The state of North Carolina currently ranks 42nd in spending per person who is living with HIV or AIDS. This lack of state funding means testing, education and prevention methods often fall to groups like the ones planning the run. They also help with housing, food and other needs that are concerns in the state population with people living with HIV, said Lee Storrow, executive director of NCAAN.
The state currently has more than 36,000 people living with HIV and AIDS, according to the North Carolina Health and Human Services. “An estimated 3,400 are undiagnosed and unaware that they are affected,” a report from the agency stated.
“We operate a food pantry that receives no funding,” Salgado said. “Two years ago we were giving out six tons of food. This year so far we’re up to 30 tons of food.”
The pantry is available to low-income people regardless of HIV status, Salgado said. The funds raised at the race are going to fund a part-time food pantry coordinator and to help purchase food and other items needed for the pantry.
RALEIGH – A food exhibit at the 2017 North Carolina State Fair offers up a serving of education about food production to visitors.
The Field of Dreams exhibit, funded by the North Carolina Dept. of Agriculture, has a closed loop path that children can take, aided by a worksheet of crops that can be found in each section. The sections – Taco Town, Subs & Spuds, Gobble Garden, and Pizza Patch – each has the crops needed to make each kid-friendly dish. Crops growing onsite include tomatoes, garlic, onions, corn and basil among others.
“We know that poor nutrition causes all kinds of health problems including cancer, diabetes, and heart disease,” said Kay Coleman, urban gardens manager for the Inter-Faith Food Shuttle in Durham, NC. “Increased obesity can lead to all kinds of problems. Helping people get good fresh food helps improve health in a community.”
The Inter-Faith Food Shuttle partners with more than 200 organizations in the Triangle area to provide fresh produce and meats to local food pantries for immediate consumption. The group also administers education programs aimed at teaching people to garden and cook and provides meals to schoolchildren through Backpack Buddies for dozens of schools throughout the region.
Marianne Weant, who has served the director of health programs for the North Carolina Parent Teacher Association (NCPTA) since 2010, said a comprehensive health and wellness policy can aid in helping stave off nutrition-related illnesses and absences.
“It’s a process,” she said. “It’s about exposure. Kids need to see, touch, and taste new foods. If there are opportunities for children to see fresh produce, they will begin over time to see eating those foods as good choices.”
The Centers for Disease Control and Prevention statistics suggest that “40% of daily calories for children and adolescents” comes from so-called “empty calories,” primarily soft drinks and junk food that do not provide nutritional value. These calories contribute to a number of health problems, such as higher rates of cancer, high blood pressure and osteoporosis.
RALEIGH – Eager students spent their Saturday learning how to perform basic first aid and cardio-pulmonary resuscitation (CPR) on adults in a semi-annual educational event.
Dr. Olive Lamm, director of The Little Medical School of Greater Raleigh and a trained emergency room physician, taught 20 middle-school students in a Super Saturday course at Powell Center for Play and Ingenuity Elementary School.
The event, hosted by the gifted support group PAGE of Wake County, is home to classes on a range of topics beyond the CPR training, including hydraulic limbs, self-portraits and bee-keeping.
Lamm’s class, which included practice on dummies and a CPR certificate for attendees, drew a crowd of students who wanted to learn about this life-saving technique.
“We learn about CPR for adults because it’s more common than infants,” Lamm said. “Anyone can encounter someone who needs CPR, and in the class you learn what to do.”
The CPR training teaching the children how to ensure someone needs help. They also practice checking someone’s pulse and doing chest compressions in addition to talking about how to let others know how to help. Because people often will watch someone trying to help in an emergency, Lamm said it is important for people who know CPR to be able to ask for help, whether it’s for a stool to be positioned in the right place to perform CPR or for a call in to 911 for professional help, anyone trying to save a life should feel comfortable telling others what is needed.
“Don’t be shy about asking bystanders who are watching to help you,” Lamm said. She works to teach her students to be be confident in their abilities despite their age. “You can’t do it all yourself.”
Lamm, who scaled back her full-time work practicing medicine, cites her love of teaching others to be confident and knowledgeable about healthy choices as the motivation for teaching these classes. Through classes like the one she taught at Super Saturday, more people are learning valuable life-saving skills.
WAKE FOREST – Local officials and residents gathered Saturday for the opening of a greenway connecting neighborhoods, businesses and schools in the town.
The event, dubbed Tri-Creek Greenway Crawl, was the culmination of an 11-year effort to connect Wake Forest to nearby Rolesville and begin connections to other towns in the Triangle region. This 3.7-mile stretch of walking space has three creeks and many wooded areas in addition to providing a walking and bicycling connection between the town’s center and various neighborhoods.
“This effort actually started in 2006 when the Wake Forest Board of Commissioners approved the town’s Open Space and Greenway plans,” said Candace Davis, assistant to the town manager and staff member who worked on this project.
The town received over 4 million from federal funding sources. In 2014, Wake Forest voters approved a bond referendum to provide additional funding for greenways, and here we are.”
Davis worked on the project and organizing the opening day celebration. She said construction began in mid-2016.
The Tri-Creek Greenway Crawl included speeches from Deanna Welker, who chairs the town’s Greenway Advisory Board, and Jan Ammons, a longtime community activist who fought for the greenway to happen. Families could participate in a scavenger hunt along the trail, and advisory board members positioned themselves throughout the trail to provide information to visitors.
Wake Forest is one of 12 towns and cities in Wake County, North Carolina. The county, which is home to state capital Raleigh, currently is ranked the “healthiest” county in the state by the Robert Wood Johnson Foundation.
“It not only provides that recreational opportunity, but that creates a healthy community. So it’s making Wake Forest even healthier than it is today,” Hutchison said.
The American Heart Association recommends that adults have at least 30 minutes of physical activity per day, and recent guidelines report that walking briskly can help to lower blood pressure and rates of type 2 diabetes as well as lead to weight loss.
The Tri-Creek Greenway is one a almost 100 miles of greenway throughout Wake County. The county’s Parks, Recreation, and Cultural Resources department maintains greenways throughout the county, making Wake County a highly-rated “walkable” city.
The Battle for North Carolina’s Water
RALEIGH – Following a lengthy – and ongoing – controversy over the disposal of coal ash, officials at the NC Dept. of Environmental Quality (DEQ) still have a range of water-related issues to address.
The Coal Ash Management Act of 2014 required Duke Energy, the largest provider of power in the state, to rectify decades of dumping coal ash, the by-product of electricity production, into unlined pits, landfills, and other spaces throughout the state. The bill identified 33 coal ash “ponds” and created deadlines and priorities for the energy giant to move the coal ash to protected sites.
Since that time, the North Carolina General Assembly has passed numerous bills granting leniency to Duke Energy in this endeavor despite significant public outcry.
In 2015, other issues related to the state’s water supply began to emerge. Hexavalent chromium, a compound known to be toxic, showed up in routine water testing in Lee County, near the center of the state. Although hexavalent chromium is naturally occurring, the levels in the water in Lee County suggest that it comes from industry use, such as the brick-making industry that sustained the county’s economy for decades.
Hexavalent chromium can cause liver and kidney damage, nosebleeds, and a weakened immune system among other ailments, according to the Science Education Resource Center at Carleton College.
GenX, a toxic chemical, showed up in North Carolina’s water supply in 2016, adding to the concerns about the state’s water. The chemical came from the plant of Chemours, a subsidiary of Dupont. The state’s Dept. for Health and Human Services issued a statement claiming that the levels found in drinking water are likely to pose “a low risk to human health” although they admit to not knowing much about the chemical.
Grady McCallie, the policy director for the NC Conservation Network, said that he views the issue as nonpartisan.
“Clean water is not a partisan issue even if it sometimes feels like it,” said the North Carolina Wildlife Federation’s 2016 Water Conservationist of the Year. “There are a number of solutions to help clean up the state’s water supply.”
(Please see below the article text for a transcription of the audio.)
RALEIGH – The North Carolina Museum of Natural Sciences exhibit on race in America has a mixed scorecard for its accessibility to patrons with disabilities and functional limitations.
The exhibit, titled “Race: Are We So Different?,” currently is in Raleigh as part of a cross-country tour. The goal of the exhibit, according to the museum’s website is to “[look] at race through the lens of science, history, and personal experiences to promote a better understanding of human variation.”
Museums are required to make accommodations under the Americans with Disabilities Act (ADA). According to the National Service Inclusion Project, around 19.4 percent of non-institutionalized Americans have a disability. Yet, the NEA reports that fewer than seven percent of museum visitors each year are people with disabilities. The American population is aging as 10,000 baby boomers turn 65 each day. Aging coupled with the increase in wounded veterans from the war on terror means an increasing population beset by a functional limitation.
Accommodations may include spaces wide enough for people with mobility disorders to maneuver easily in wheelchairs or walkers. For people with hearing difficulties, exhibits should have a written version of audio available or sign-language options available when possible.
Many options exist for people who have visual impairments, according to a report from the National Endowment for the Arts (NEA), such as offering visual markers with descriptions of visual arts displays and using simple fonts for explanatory placards.
“This one is very…let’s say reading heavy,” said Robert Johnston, who serves on the Mayor’s Committee for People with Disabilities in Raleigh. Johnston, who is African American and has a visual impairment, has worked to schedule interpreters who can visit the exhibit with people who cannot read the plaques and see the visual arts representations. “This exhibit is really important, but it’s not tactile. We really need someone to help us understand everything in this important exhibit.”
The exhibit will remain in Raleigh until Oct. 22 and is open daily with varying hours.
TRANSCRIPTION OF AUDIO:
SLIDE 1: “Race: Are We So Different?” currently is in Raleigh, North Carolina. The exhibit does well in addressing mobility issues but falls short in addressing for people with visual impairments.
SLIDE 2: Typical mobility challenges at museum exhibits include the space to maneuver wheelchairs and the ability to reach tables and other exhibit spaces comfortably.
SLIDE 3: The photo on the left shows the large open spaces in the main thoroughfare of the exhibit making it accessible for people who are in wheelchairs and walkers. The “privilege” room in the photo on the right was the only accessibility problem because it required stairs to enter.
SLIDE 4: Viewing rooms scattered throughout the exhibit, such as on the left, were wide enough for wheelchairs to enter, and the low counters demonstrated on the right had placards to read that were accessible to people in wheelchairs.
SLIDE 5: The museum's exhibit proved more difficult for people who are visually impaired which includes people who are blind, who are colorblind, and who have difficulty discerning shapes.
SLIDE 6: The replica pharmacy was a good station for the visually impaired because it had excellent light and easy-to-read screens with important information.
SLIDE 7: Computer screens typically have user controls that make an adaptable for people with visual impairments.
SLIDE 8: The photo above shows two difficult portions of the exhibit. The first, a visual arts marker, is a thin strip of paper adhesed to the wall. The photo on the right shows a handwritten note that is part of one of the pieces of art. It does not have an easy-to-read typeface translating the handwriting into print.
SLIDE 9: Although the exhibit does have subtitles for any video stations, the National Endowment for the Arts suggests excluding colloquial or complex speech for better comprehension.
SLIDE 10: In summary, the exhibit gets a mixed scorecard for being accessible to people with mobility and visual disorders. There are a number of simple improvements that could be made to help make this exhibit available for all.
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.