Anyone who lives with rheumatoid disease or who is close to someone with RD knows that it takes strength and courage to battle this illness each day. But what about when the person battling rheumatoid disease is a child? It takes a special kind of resilience for both the child and the entire family. Today, we wanted to share with you a special story about one child living with rheumatoid disease. We'd like you to meet Addison -- a seven year old who has been living with RD for over five years. Addison and her mom, Shanna, share their story below in an effort to educate others on the fact that rheumatoid disease can affect people at any age.

Interview with Shanna and Addison

Firstly, could you please tell us a little about your family and Addison?
Addison is a spunky, kind, loving 7 year old with the most beautiful strawberry blonde hair. We are a family of five which includes Addison’s 10 year old brother, Nathan and a shitzu puppy named Felix! We live in Boca Raton, Florida and some of our favorite family activities include going to the movies, beach, swimming and bowling.

At what age was Addison diagnosed with rheumatoid disease?
Addison was diagnosed with JRA (Juvenile Rheumatoid Arthritis) just before her 2nd Birthday.

What were the first symptoms that appeared?
Addison would always want to be held and I just thought she was a “needy” baby who was struggling with separation anxiety. For her second birthday we planned a family trip to California and while in the parks, she refused to walk, either wanted to be held or pushed in her stroller. A couple of weeks later while at home, Addison was playing with some toys on the floor. She was talking about her favorite doll that was located across the room and instead of getting up to go get it, I saw her crawl across the room. Since she was almost 2 and had been walking for over a year, this was very concerning to me. I brought that up at her two year old doctor’s appointment. Her pediatrician saw right away how swollen her joints were and referred us to Seattle’s Children’s Hospital (as that is where we lived at the time).

What has been Addison's experience with rheumatoid disease treatments?
For three years, we had to give Addison weekly injections of methotrexate. The first couple of months we struggled by holding her down while one of us injected her, to finally administrating the shot right after she had fallen asleep. We dreaded Sunday nights and it never got easier. If she moved, your first instinct was to pull the injection out. Sometimes she would wake up in a haze and ask what we were doing, sometimes we were successful and other nights we were up to midnight because she had woken up completely and was "on to us". Her rheumatologist mentioned that we could “hide” the medicine in ice cream or smoothies. We created “Smoothie” Sundays where we would have a healthy smoothie to start off the week. We would all drink them, except Addison’s would have her medicine in it. She could taste it and she would gag with every sip. That lasted about three weeks, so we were back to injecting her again. Things were good. The medicine was controlling her JRA....until it wasn’t. I started to notice she was having trouble walking long distances. She couldn’t walk an entire grocery store and would ask to sit in the cart 99% of the time, she was tired but still wanted to do normal things 7 year olds like to do. She had asked me to join a gymnastics class and I was so excited for her. The first day was horrible as she physically could not do what the other girls were doing. Her little body just didn’t have the strength. As she stared at me with tears rolling down her face, I knew the medicine wasn’t working anymore. After talking to her doctor, we decided to try joint injections and they worked for about six months. It was such a nice break for her not to have to be on medication. At her next doctor appointment, she prescribed leflunomide and that would allow her to swallow a pill. The first day, she swallowed it like a champ! However, after a couple of weeks, we started to notice she was having stomach issues and had to go to the bathroom after every meal, which we knew was a side effect. We felt so defeated. During that time, she also came down with a horrible virus which required her to be hospitalized, causing her to miss 2 weeks of school. Her doctor took her off that medication so she could fight that viral infection and once she was healthy we decided on joint injections again and to continue leflumonide but at a lower dose.

What do you see as the hardest thing about living as a child with this disease?
We hear all the time “she doesn’t look sick” and that is frustrating. Addison is resilient, strong, has a positive outlook and amazing faith. This helps project on the outside that she is happy and enthusiastic despite the daily battle that she fights against JRA. We have heard comments from people because no one looks like they “need handicap parking”. Addison has a mobility chair and at the age of seven people have told us directly that she’s “too old for a stroller”. As a parent you advocate, but as a child it makes her feel different. That’s not fair for her to feel that other people see her as not being “normal”.

In what ways has rheumatoid disease most impacted your family?
We recently relocated from Seattle, Washington to Boca Raton, Florida because the cold winter had been awful for Addison’s joints. She barely could get through a week of school and would go to the nurses office during her recess times as she couldn’t handle the cold or keep up with her friends. While on a visit to Florida, she mentioned that she “didn’t hurt there." She had no quality of life in Seattle, so we moved our family across the country so she could feel more comfortable and she is doing wonderful.

What do you most want others to know about rheumatoid disease?
Arthritis is not just an “old” person’s disease. It doesn’t discriminate and can affect anyone.

What information, encouragement or advice do you want to share with other caregivers, especially those caring for other children with rheumatoid disease?
When Addison’s medication was controlling her arthritis, I thought, “she’s healed, she will take this medicine and it will go away." I didn’t take into consideration that this is a chronic disease and while she may feel good on some days, it will most likely be forever. Before she was diagnosed, I felt guilty that I used to get mad at her when she wanted me to hold her because it hurt to walk. She was too little to tell me how much pain she was in. We felt guilty as a family when we would get disappointed because we couldn’t do certain activities because she couldn’t keep up. I realized it was normal to have all those feelings. Children with this disease have an extreme tolerance to pain, discomfort and will adjust to their daily activities based on how they feel throughout the day. Because this is what they experience on a continuous basis, even when you live with them each and every day, you may never realize they are working through a bad day. Often it takes an extremely bad day for you to recognize it. Watch for the subtle signs, not just flareups, fatigue or limited movement. That likely comes on the most difficult of days yet everyday can be a struggle.

Is there anything that Addison would like to tell other children living with RD?
Children with arthritis are still kids! We want to be treated normal and don't want to be teased because we can't do certain activities that are so easy for other children to do. We have feelings and want you to understand that we have pain when we play tag or play sports. We want to participate, but sometimes just (physically) can't. Just be kind and be nice and still include us.

Thank you, Addison and Shanna, for sharing your story with us!

RPF believes that sharing our own personal stories about living with rheumatoid disease is a great way to provide support for others. Knowing we are not alone in our experiences can be one of the most encouraging things.  We thank our supporters who are willing to share their stories and help others who are going through similar situations. Let's learn from one another! Click here to share your story.

We love the opportunity to talk to and interview healthcare professionals and to highlight those we see who are doing an outstanding job in the field of rheumatology. We originally connected with Dr. Paul Sufka online through the use of Twitter, and through a "Tweet-Up" event at the 2012 American College of Rheumatology (ACR) Annual Meeting. Dr. Sufka graciously agreed to an interview with us and we are pleased to share a piece of his story with you.

Dr. Sufka is originally from Minnesota, though he spent his high school and undergraduate years in Michigan. He attended the University of Iowa for medical school and did his internal medicine residency, a chief residency and a rheumatology fellowship at the University of Minnesota. He currently resides in Minnesota with his wife, "an energetic toddler," and a shih-tzu. In his free time, he enjoys "voraciously reading and working out." Dr. Sufka currently works as a rheumatologist for HealthPartners, a large multispecialty group practice based in St. Paul, Minnesota.

Somewhere between practicing rheumatology, and balancing a family, Dr. Sufka has managed to take on several side projects. "A few of my current side projects include RheumJC, a Twitter based-rheumatology journal club, consulting for healthcare technology startups, and completing work on ArthritisProject.com, which I intend to be an online course (or possibly series of courses) for people with arthritis." Dr. Sufka hopes that the website -- including a combination of educational articles, videos and worksheets -- will be ready to launch by mid-year.

As someone so actively involved in his field, we wanted to know what originally got Dr. Sufka interested in rheumatology. "I'll be honest", he says, "I first thought I was going to be a cardiologist or critical care doctor, which I did really enjoy for short bursts during residency, but found myself much happier after doing a rheumatology rotation, where I saw the chance to form relationships with patients and have impact on their lives over longer periods of time."

A good doctor-patient relationship is something we often try to promote. To get a view from the physician's side, we asked Dr. Sufka what he thought patients could do to help foster better relationships with their doctors. His answer was two-fold:

1. "Be honest with your doctor about how you’re doing and what you’re doing. If you’re not taking a medication because of side effects, let us know, because we might have tips to minimize them or can offer something alternative to try."

2. "When patients give my nurse 1-3 questions written on a piece of paper that I can look at before entering the room, I often feel that I can think of (or look up) better answers or solutions than when I'm thinking of answers in the room. This being said, the key thing is spending a couple minutes preparing to get the most out of your appointment."

As a consultant and avid user of technology, we asked Dr. Sufka how technology has enhanced the way he practices rheumatology. "I don’t think most patients would notice during a visit how I use tech", said Dr. Sufka "I review each patient’s chart before I enter the room, and then try to only look at the computer when I need to remember something specific or when I’m entering orders. I haven’t come across any tech that I think really enhances a human-to-human interaction in clinic, and I don’t think we’ll really find a way to speed this up." I think most of us would agree that there's not much that can beat real face-to-face communication.

However, outside of the exam room, Dr. Sufka says, "I have numerous systems in place to optimize the multiple inputs that require physician time and attention, so that I actually have more time to spend with patients." In 2015, Dr. Sufka actually presented information on this topic at the American College of Rheumatology Annual Meeting. "Unfortunately," he says, "modern EHRs [Electronic Health Records] are not designed for efficiency, but I’ve figured out a number of my own workarounds." Creating efficiencies in the behind the scenes work to allow more time with patients sounds like a very positive way to integrate technology.

But what about the future of technology in rheumatology? We asked Dr. Sufka how he thought technology will revolutionize rheumatology care, and he had several ideas. Firstly, he noted that "We have a massive need for EHR interoperability. The fact that major EHR platforms don’t really communicate with each other is a major problem (and often disservice) to patient care." Secondly, he says, "OpenNotes (patients having easy, direct access to the notes in their chart) will help minimize errors and increase their understanding of their condition." And, finally, Dr. Sufka see great value in online communities, which he says may more rapidly help find better treatment options and help identify and minimize side effects from treatments. "While we certainly derive huge value from large randomized trials," he says," I often think of this quote by Tim Ferriss: 'The extremes inform the mean, not vice-versa.'”

People with rheumatoid disease (PRD) know how much of a challenge it is to live with this chronic illness, especially those who are "outliers" and whose disease pattern doesn't follow the mean. The flip side to that is the challenged posed to healthcare professionals tasked with treating PRD. When we asked Dr. Sufka what he thought was the greatest challenge facing rheumatologists today, he responded with an answer that is also one of the greatest challenges for patients: lack of availability. "Patients already have a difficult time establishing care with a rheumatologist," he says, "often waiting several months for an initial visit, and then often have a difficult time being scheduled for follow up." Dr. Sufka points to an abstract presented at this year's ACR Annual Meeting in Washington D.C. titled 2015 ACR/ARHP Workforce Study in the United States: Adult Rheumatologist Supply and Demand Projections for 2015-2030. "The study shows that in 2015 there are the equivalent of 4,997 full time rheumatologists in the U.S, which will decrease to 4,470 in 2020; 3,645 in 2025; and 3,455 in 2030." Dr. Sufka's response to this data? "Yikes!" Yikes is right. Unless something turns around, availability will become an increasingly larger challenge down the road.

Living with rheumatoid disease can be scary -- especially for those newly diagnosed. We asked Dr. Sufka what his best piece of advice would be for somebody who was just recently diagnosed with RD. His recommendation was to "start by becoming educated about your condition: really try to understand the risks of rheumatoid disease and the treatment options, along with potential side effects of each of these. You’ll learn that there are an ever increasing number of options to treat your condition, so if initial treatments are not working or if you have side effects, we typically have a list of alternatives to try." He also says that "when you’re educated about your condition and options, you can have a much better discussion with your doctor and will typically do much better in the long run. This also allows you to explain what you’re going through to friends and family, who often won’t have any point of reference to understand what you’re going through."

We agree that education is crucial and encourage anyone with rheumatoid disease to check out our resources section for links to additional information -- and we look forward to seeing the materials that Dr. Sufka is putting together through ArthritisProject.com. Despite the many challenges we face, if PRD do their part to educate themselves and share honestly with their physicians, and if physicians do their part to maximize and make the most of the time they do have with patients, we can see improvements in patient care and outcomes.

Find Dr. Sufka on the web at http://paulsufka.com/ and on Twitter @psufka.

We had the privilege of meeting Dr. McInnes at the 2016 American College of Rheumatology Annual Meeting in Washington D.C., after one of his speaking sessions. We love the opportunity to highlight rheumatologists and healthcare professionals who demonstrate excellence in science and patient care, and Dr. McInnes was kind enough to agree to an interview.

Dr. McInnes is Professor of Experimental Medicine and Rheumatology, and Director of Institute (Immunology) at the University of Glasgow. He lives with his wife, two daughters, and "an irrepressible black Labrador just outside Glasgow, in the beautiful west coast of Scotland." He speaks of Glasgow as a "reborn city built on a rich heritage of heavy industry and world trade, but more recently upon academia, health care and culture. It is a vibrant and exciting place to be!" As far as pastimes go, he says, "We are close to the mountains, upon which we enjoy walking, and some of the best golf courses in the world upon which I play rather poorly. In those very occasional quiet moments, my solace is in music of many kinds, best enjoyed with family."

Drawn to the field of rheumatology by "the challenge of looking after chronic disease," Dr. McInnes began his career when there were few targeted treatments available for rheumatoid disease and a lot of unmet clinical needs. "Rheumatology from the perspective of the clinician," he says, "requires a rare combination of communication, empathy and commitment to the long term," which he found enticing, though far from easy. "I learned from wonderful mentors who demanded thoughtful, meticulous and considerate care of people with rheumatic diseases – I have never forgotten those remarkable lessons. As time has passed I am now learning most often from the people with rheumatic diseases whom I treat – they are inspiring and constant reminders of how much more we must do in the field. I care even more now than I did when I set out in the discipline." Of his patients, he says, "They humble me with their courage and continue to teach me about the disease to inform my research."

Dr. McInnes was also training as an immunologist -- someone who studies the body's own defense system -- and, he says, "It was becoming clear at that time that the immune system might play a significant role in the causes and perpetuation of many rheumatic diseases. So it has transpired, and as such in the last decade I have been able to work with superb scientists investigating the causes and consequences of rheumatoid and psoriatic arthritis. Researching the causes of rheumatic diseases is like being part of a great novel – every page that turns brings new possibilities, but often with twists and unexpected turns. Being an academic physician engaged in both clinical care and research is a privileged position indeed."

Seeing that he takes a very patient-centric approach to his work, we asked Dr. McInnes what he thought could help foster better relationships between people with rheumatoid disease (PRD) and their doctors. He offers that "we should accept that we all have different personalities and that relationships that people form with their doctors may be quite different, but still good for that individual! Speaking from my point of view as a rheumatologist – I always encourage people to tell me how they really feel rather than what they think I want to hear – good doctors should respond by seeking solutions for what really ails you. Sometimes we need to find a range of solutions but can only really appreciate this if we understand the full extent of the problems you are facing as a result of the disease."

There are a myriad of challenges facing rheumatologists today. One of the largest challenges according to Dr. McInnes, and I think we'd all agree, is that a cure to this disease continues to elude us. "I would like to believe that we will one day be able to cure some of the rheumatic diseases," says Dr. McInnes. "The current combination of amazing medical research technologies together with emerging information and digital capabilities makes this ever more possible. But still some time in the future I fear…"

One of the challenges often faced by PRD is the assumption that "rheumatoid arthritis" is simply a form of arthritis and that its effects are limited to achy joints. While acknowledging the term as descriptive of the most obvious manifestation of the disease, Dr. McInnes also says that "the phrase hides the wider implications of the disease given the higher rates of heart disease, strokes, depression and osteoporosis that we now recognize as a part of the clinical spectrum." The priority, he says, "is to constantly educate our colleagues across the health disciplines about the broad challenges posed by the disease."

Despite the challenges, Dr. McInnes sees a lot of hope for the future of fighting rheumatoid disease. "Perhaps most exciting is that we now have remarkable technologies (both laboratory and imaging) that will allow us to explore the very origins of the disease, even before it is clinically obvious to doctors or even patients. This together with the new discipline of 'systems medicine', which brings information and computational technology together with conventional biology, will allow us eventually to decipher which pathways are driving disease in individual people. This in turn may allow us to select the best medicine for a given individual person at the 'right' or 'best' time. If we could find 'at risk' people, before they even develop arthritis, we could think of preventing disease. Ultimately this will lead to designer drugs and diagnostic tests – so called personalized medicine. This is some way off, but if realized could change completely the way we think about immune diseases."

If rheumatology research is a novel, we hope that more characters along the likes of Dr. McInnes are added to the story, that as the pages continue to turn and we work together, we might come to a happy ending in this fight against rheumatoid disease.