25 – 30 million people in the United States, 30 million people in the European Union, have been diagnosed with a Rare Disease.
These diseases can be acute or chronic. They may include certain types of cancers, autoimmune disorders, digestive disorders, infectious diseases, neurological disorders and many other types of illness. Individuals living with rare diseases may also be immunocompromised due to their complex nature. According to public health officially people that are immunocompromised are at higher risk for serious complications from the coronavirus than others.
During this time we ask that you help patients living with chronic illnesses by adhering to public health officials recommendations. Follow hand washing guidelines, maintain social distancing, avoid touching eyes, nose and mouth and if you have a cough, fever or have difficulties breathing seek medical care early. See CDC.gov for updates and on the COVID-19 pandemic.
Barby Ingle was diagnosed with Reflex Sympathetic Dystrophy. This is her story & patient experience living with a rare disease.
My patient journey began back when I was 26 years old and I developed endometriosis. And I went through a few years of treatments, surgeries, medications, tried a lot of different things. I ended up having a full hysterectomy, and that was resolved, I thought I can conquer anything, I’d beat this and I’m gonna be doing great. At the age of 29, I developed a neuro autoimmune disease called Reflex Sympathetic Dystrophy, a rare disease.
It took 43 doctors in three years before seeing a proper diagnosis this time. I did all the wrong treatments. I was over treated, undertreated, mistreated, and after three years, finally, a doctor looked at all of my records from all the other doctors which at that point were three-inch binders. He was able to give me a diagnosis and give me the proper testing for an official diagnosis. It still took another four years to get the right treatment, and that’s why I became a patient advocate and someone sharing their voice in the chronic pain community so that other people don’t have to go through what I went through.
Challenges in Digital Health Patient Experience
Some of the biggest challenges in my digital health experience were getting access to my records, making sure that my records were accurate and changed when they weren’t accurate. One of the worst problems that I went through was receiving a diagnosis from radiologists instead of from a doctor or oncologist. I had no idea of where to go or what to do because the wrong doctor told me the information through an email.
Although, I like getting text messages and reminders about appointments, and maybe don’t eat after midnight before surgery tomorrow or that type of message. Getting a message via phone that said that I had cancer was one of the worst ways to find out that I could think of. That was probably the biggest breakdown in tech that I went through.
I also have times where IVs failed or different machines that I went through, were not working properly. That was a challenge. What do you do at that moment? Do you leave the hospital or leave the doctor’s office? Or do you stay in and try to work it out and have to go through and face those decisions when you’re trying to bring technology into what you’re going through. As the patient experience can be quite a challenging thing to do.
Advice to People Living with Chronic Health Issues
The advice that I would have for stakeholders in the chronic patient communities is to include the patient’s voice in the projects that you’re doing if you’re doing helpful research. Create the research projects, ask them what it would take for them to be able to leave their homes, and come into your facilities for that research project.
If you’re creating an app for a patient to use, what do you see as the end-user as the consumer, the patient, the positives and negatives, and how easy or hard is it for them to use, a lot of patients are not tech-savvy. Those patients need to have their voices heard and, and be understood, but they don’t always get the technology. So make sure that if they’re that type of patient that needs a little bit more help you take the time to educate them, but also listen to their voice at the same time.
Being an active participant in health Care ecosystem
I am passionate about the work that I do, being positive, hopeful, and hoping that one day there’ll be a cure for what I’m living with. I want people to know that the health care system can be challenging. But, if you take it moment by moment, you can choose yourself to in through any of the challenges and obstacles that come up and know that for as long as your life you keep on keeping on living your life and getting through the healthcare system. It takes you to be an active participant on whatever level you’re coming to the table, whether you’re the patient, the provider, the research scientist, the data collector, whatever your job is, it’s an important job in the overall process and outcomes for pain patients.
This interview was recorded at EXPO.Health