CHARLOTTE – At first glance, Anessa Powell does not look like someone with a medical condition. But every day, Powell deals with the ups and downs of Addison’s Disease, a rare, autoimmune condition in which her adrenal glands do not function properly.
Powell, a south Charlotte resident, will represent North Carolina at the annual Rare Disease Week on Capitol Hill in Washington, D.C from Feb. 25 to 28. She will have the opportunity to meet other advocates, legislators, pharmaceutical companies and doctors to increase awareness of rare diseases, like Addison’s.
Only one in 100,000 people have Addison’s Disease. The disease prevents Powell’s adrenal glands from producing hormones equivalent to cortisol and aldosterone, which are both necessary in daily life. She takes medication throughout the day to offset the hormones. Additionally, Addison’s Disease can make those affected get dehydrated very easily as it prevents the body from retaining salt.
Every day, Powell and the few others living with Addison’s Disease must heavily schedule their day-to-day activities. Powell said as a result of the disease, she does not recover quickly from illnesses. There is no way to monitor the disease at home, so many living with Addison’s have to use their instincts to determine the severity of the illness. Powell said sometimes people can misinterpret, which causes them to end up in the hospital.
This year will be Powell’s first time attending Rare Disease Week. She was one of three North Carolina residents to receive a stipend from the EveryLife Foundation to attend. Powell sees Rare Disease Week as an opportunity for those affected by rare diseases to network, come together and make sure their voices are heard by congresspeople.
Julia Jenkins, who is the executive director of the EveryLife Foundation, said patients in attendance could ask their state representatives to join the Rare Disease Congressional Caucus. They also could lobby for funding requests and appropriation from the Food and Drug Administration and National Health Institutes, as well as emergency response acts.
In the past, advocates at Rare Disease Week have prompted congressional representatives to draft bills that would help other patients with rare diseases. Jenkins said examples of these include the Smile Act, the Creating Hope Act and the Fast Act.
“The ability for a patient to raise a million dollars or to actually develop the science themselves is a high bar, but when they come to Rare Disease Week, a parent advocate or patient advocate can actually get a lot of power back over their disease and really make a difference on behalf of themselves, their families and other patients with rare diseases,” Jenkins said.
Though some will push for state bills and congressional action at Rare Disease Week, Powell said she is just attending the convention as a voice for people with rare diseases. She said many diseases go unnoticed because their symptoms are not outwardly noticeable.
“I guarantee that there are people you know that have something that they are dealing with,” Powell said. “It could be anything from thyroid disease, which is rampant with women over the age of 40. There are things that people are dealing with on a daily basis that they don’t talk about. I’m just more vocal about it because it is my passion to raise awareness.”
Powell spends her time giving talks to various companies and organizations about “invisible” disabilities. She said she often uses the example of seeing someone park in a handicapped spot at the grocery store who looks completely normal.
“You’re not seeing what it could possibly have taken for this person to get out of the house that day,” Powell said. “This person could have been in bed for the past week but was having a good day, which sometimes only happens once in a blue moon for some of us that are living with rare or autoimmune diseases. You don’t know what it takes for that person to walk around the grocery store, get their bags back into their car, drive home and then they have to get their bags out of the car and into their house. This could be the only outing that person has for the entire week.”
Because she often has energy and a positive attitude, she said many do not assume she lives with an autoimmune disease. But there are days in which she feels tired and fatigued. Powell said just because she can accomplish something one day does not mean she can do it the next day, which is a result of Addison’s Disease.
When she was first diagnosed in 2013, Powell felt very alone in her condition. At Rare Disease Week, she will also represent Autoimmune Sisters, a new, online community for women living with autoimmune diseases.
“Unfortunately, there’s so many of us who feel isolated when you’re first diagnosed,” Powell said. “We don’t know where to turn because oftentimes, there’s not information out there. When I was diagnosed and you only have one in 100,000 people who have your condition, you feel very alone.”
Autoimmune Sisters aims to give women a community to turn to where they can discuss their condition, get tips and tricks from others and watch webinars with experts. The organization’s website launched in October and has gained a big following on social media since.
Powell said she hopes to get the word out about Autoimmune Sisters to those in attendance at Rare Disease Week. Ideally, she said, when a woman is diagnosed with an autoimmune disorder, a doctor will explain her diagnosis and prognosis, then hand over a pamphlet for Autoimmune Sisters so she can connect with others, get involved and feel less alone.
With so many getting diagnosed with autoimmune diseases on a daily basis, Powell wants congresspeople to become more aware of the effects these conditions have on the country. She believes many of the congresspeople she speaks to will be able to identify at least one person in their lives living with a rare or autoimmune disease.
“We have an epidemic or a public health crisis, whatever you want to call it,” Powell said. “It’s rampant and it’s growing. There are various reasons for that; it’s not just one thing that they can pinpoint and say it’s the reason. My main focus is bringing awareness to that because if we think we have major, major medical costs in this country now, it’s just going to continue to get worse if we don’t get an idea of what’s coming down the pipes.”
After Rare Disease Week, Powell plans to first schedule time for her body to rest as her Addison’s Disease will require her to. She also hopes to continue speaking to organizations and companies in the Charlotte area to spread disability awareness.
“A person who comes in a wheelchair and a person who just walks in could each equally be disabled,” Powell said. “You just can’t always see it.”
Want to learn more?
For more information about Powell’s work, visit www.anessapowell.com. Rare on the Road is coming to Raleigh on March 28 for patients and advocates who cannot attend Rare Disease Week on Capitol Hill but want to learn how to advocate and get involved in the community. Julia Jenkins said EveryLife has partnered with Global Genes to provide small travel stipends available for those outside of Raleigh. For more information, visit www.raretour.org.