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Kinkisha’s Story

August 4, 2019 in Advocacy, Encouragement, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visit our story page.

Tell us a little about yourself and your family -- where you're from, what you do, what your interests are, etc.

I am a 32 year old mother of 2 boys, ages 10 and 3. I am engaged to my love of 5+ years and I am a LVN. I am Kansas born, but Texas raised. I grew up in East Texas, but recently relocated to the DFW. I enjoy reading and listening to a host of different podcasts. I also enjoy watching baseball and basketball, especially when I get to watch my boys.

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Judy’s Story

March 1, 2019 in Encouragement, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visit our story page.

Tell us a little about yourself and your family -- where you're from, what you do, what your interests are, etc.

I'm a retired Foundation Phase teacher from Jeffreys Bay South Africa. I live with my husband and our 2 sons on our family farm. I'm an avid walker and swimmer and have many creative hobbies, all involving these precious hands of mine.

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Savannah’s Story

February 21, 2019 in Encouragement, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visit our story page.

Tell us a little about yourself and your family -- where you're from, what you do, what your interests are, etc.

I was born and raised here in the beautiful state of Texas! My interests include designing clothes and putting together funky outfits. I also love playing tennis with my friends to keep myself active and fun.

When were you diagnosed with RA/Rheumatoid Disease?

I was diagnosed at age 8.

What was your first symptom?

I woke up one morning paralyzed from my hips down. I could not move one bone whatsoever and had to be rushed to the nearest doctor.

What is the biggest way rheumatoid disease has affected your life?

Although my arthritis is challenging, it has created some beautiful achievements to me. I serve as a role model for girls in my school who also deal with autoimmune diseases. We meet with one another to uplift each up other that are battling a similar battle, it is a beautiful thing. The most challenging part of having my Rheumatoid Arthritis is getting bullied in school. This past December I was teased in front of class about how my JRA is fake and my pain is all for attention. The girls who said this in front of the class will never have to walk a day in my shoes or know what it feels like to sit hooked up to a machine receiving medicine. Although the bullying part absolutely hurt me into pieces, I had to remind myself that I am loved by my family and friends and people have a mean heart for no reason.

What has been your experience with treatments for rheumatoid disease?

My first medicine was Methotrexate, which only helped for a couple of years. My second and current treatment I have been on for 2 years now is Orencia infusions. This medicine has drastically improved my arthritis, it almost feels as if I am close to remission!

What do you want the public to know about rheumatoid disease?

That I am beautiful. No matter how many times this disease knocks my off my feet, I am a strong beautiful woman and I will not let it rule me!

How have you worked to overcome challenges presented by rheumatoid disease?

Reaching out to my peers when I feel discouraged. I've learned its okay to ask for help or if you need encourgement to get you through the pain.

What have you learned through living with rheumatoid disease?

That you need to take care of your body. What you put into it is what fuels you, make sure you are taking care of yourself and pain or else no one will.

What encouragement or advice would you give to someone who is newly diagnosed?

Better days are coming. I know it is a scary thing to get diagnosed with but I promise that you are loved and you are so strong, you WILL get through this no matter how severe the pain is.

Reflections on ACR 2018

January 1, 2019 in Advocacy, Encouragement, Events, Patient Input

by Shannon Young

On the final day of this year's American College of Rheumatology (ACR( Annual Meeting, while I was manning our booth, a physician from another country stopped right in front of our table and said, “YES! That is so correct! This is the problem people don’t understand.” He was referring to our background which was of one of our billboards with arthritis crossed out, disease written above it and the tagline that arthritis is just one symptom. We talked for quite a while about the many facets of this disease that are misunderstood such as the increased risk of heart and lung issues and the need for better understanding that this is a multifaceted DISEASE.

The opportunity to attend ACR in October 2018 was an incredible blessing. I went understanding that my primary role was to represent patients and to be an advocate for us in the midst of physicians and pharmaceutical companies. Not only was I able to do that, but it was like being in a different world for a few days, a world that spoke my language.

Since my diagnosis nearly 7 year ago, I have relished the moments where I have felt understood. There have been few. So often someone will ask me what medications I am on to treat my disease and if I give the real answer, I can tell it’s too much. Why wouldn’t it be? It is so much to understand - DMARDS, biologics, biosimilars, and all with various points of entry on the immune system. All of that was different at ACR. While I was there to educate on the patient experience, I was also a learner and soaked up everything I could about our disease. Here are my takeaways as a newbie to this yearly conference.

1. We all have so much to learn. Not only do physicians and pharma need to learn about US and our experience, but we need to continue to educate ourselves about this disease process. As a patient, I need to keep reading, researching and then advocating. While we can’t all decipher numerous research articles, we can utilize the resources available such as Kelly Young’s book that does a phenomenal job of combining research with patient experience. I’ve considered myself to be an educated patient, yet after reading Kelly’s book and attending ACR I have been able to advocate for further testing for myself in regard to my heart and lung functioning. After learning what I did, I could no longer ignore or deny the symptoms I was having.

2. Pharma is not the enemy. In our cynical world it is easy to fall into the, “Pharma doesn’t want the cure for _ because then they would lose money.” I saw the passion in the folks we talked to. They DO want to make our lives better. Bringing a single drug to market carries significant costs, and most don’t make it there. We must continue to work with them so that the patient experience is always at the forefront. That is something RPF is extremely committed to doing.

3. We must ramp up our collective efforts to advocate for patients with Rheumatoid Disease. RPF is the only organization dedicated solely to Rheumatoid Disease and our board recognizes how important it is that we continue to put a focus on our particular experience. Arthritis is just one symptom for us and until the world understands that, our mortality rates will be too high and we will continue to be misunderstood and undertreated for the many facets of this disease.

4. There is HOPE. I will admit that going in, I was feeling a bit defeated individually. I’m one of the patients who has been on multiple biologics (8) and other medications, with little or short lived response. It’s hard to have hope, when the list of possibilities is dwindling. Seeing RPF connect with the many pharmaceutical companies’ patient advocates and knowing they are vested in how they can help beyond providing medications was heartening. My most hopeful moment is what you see in this photo. Every day there was a poster session where the researchers would present their results and be available for about an hour to answer questions. After the big rush on the last day, I went up to this upper area where you could see the whole gallery. Just look at all the research being done! These displays are double sided and were changed out for 4 days! That is a lot of research that has the potential to change our lives.

5.We must continue to bring in our healthy counterparts. The Rheumatoid Patient Foundation now has several board members who do not have the disease, but are vested because their loved ones do. Their support is instrumental in this fight. Often the people that love us feel helpless to change anything for us. Letting them know they can get involved in advocating with us takes some of the burden off us and allows us to draw from their strength. We must be open to this help.

ACR 2018 – Coming Full Circle

November 6, 2018 in Advocacy, Awareness, Encouragement, Events

by Dana Symons

Seven years ago, I had my first volunteer experience with the Rheumatoid Patient Foundation. It was also my first time attending the American College of Rheumatology Annual Meeting, which was held that year in Chicago. It was an experience that changed my life. It was eye-opening and exciting as I saw so many people from multiple disciplines coming together with the goal of helping people with rheumatic diseases. It was also where I got to meet some long-time internet friends face-to-face, including RPF Founder, Kelly Young, several other patients, and some rheumatologists that I knew from around the globe. The experience gave me hope that by working together, we really can improve the lives of people with rheumatoid disease and work toward a cure.

This year’s ACR Annual Meeting brought us back to Chicago – and me to my sixth time attending this annual conference with RPF. Looking back, it’s fun to see the progress that has been made since that trip seven years ago. Back then, we were just about the only patients to be found at the conference. Over the years, that has begun to change and the ACR has been more open to involving patients in the conference, even having a special section of patient poster presentations in the poster hall, and having more conversations and sessions that are patient-centric.

There seemed to be a general attitude shift, where a number of years ago we received push back from some people who seemed to think that we had “arrived” at the pinnacle of what was needed in rheumatoid disease treatment and that patients were doing just fine. Whereas this year, we received no push back, and instead were embraced with open arms by other attendees (doctors, researchers, biotech and pharmaceutical employees) who see the need for more and better resources for people with RD and for heightened education and awareness of the true nature of this systemic disease. We offered free copies of the book, Rheumatoid Arthritis Unmasked, and educational “Treat to Target” posters for doctors’ exam rooms. We had an overwhelming response, with requests for resources from doctors in nine different countries!

Other things have changed, too. New drugs have come on the market – including new oral medications, auto-injector pens for methotrexate, and biosimilars. Biosimilars have been a huge topic of conversation for the last few years. A biosimilar is kind of like a generic version of a drug, except that since these medicines are made biologically rather than chemically, they are not exactly the same as the branded drugs. They offer a potential cost savings and theoretically similar response rates as their branded counterparts – though there’s some debate about whether the branded and biosimilar drugs would work the same way in a particular individual. There are also new drugs still in the pipeline that offer future hope to people who have not responded to current treatments on the market.

On the whole, this year was a very positive experience, and it feels like we have come full circle back to Chicago, and back to a place of hope and possibilities. We set things in motion in 2011 and have made some strong headway toward our goals of patient involvement, recognition of RD as not just arthritis, and support for our educational and awareness campaigns. There is lots of work yet to do on all fronts, but it seems that in many ways, things are headed in the right direction. Let’s fight together to keep this momentum going until we reach our final vision: a world where no one suffers from rheumatoid disease.

Addison’s Story

June 14, 2017 in Encouragement, Interviews

Addison's Juvenile Rheumatoid Arthritis Story

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.

addison2

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).

addison3What 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”.

addison4

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.

addison-family

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.

Interview with Dr. Paul Sufka

January 16, 2017 in Encouragement, Interviews

dr-sufkajpg
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.

Interview with Dr. Iain McInnes, Glasgow, Scotland

December 22, 2016 in Encouragement, Interviews

dr-mcinnes
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.

Changing the Landscape of Rheumatoid Disease

November 28, 2016 in Advocacy, Encouragement, Events

 

changing the landscape of rheumatoid disease

The times they are a-changing. Perhaps not as quickly as we'd like, but there are a lot of signs that things are shifting in a positive direction in the field of rheumatology, with a focus on creating better outcomes for people with rheumatoid disease (PRD). Several years ago, the American College of Rheumatology made a big push for what they call "Treat to Target" (T2T). T2T involves setting a treatment goal and modifying the therapy if the goal is not reached -- with the underlying premise that "if you measure it, it will improve." T2T has potential to foster greater collaborations between patients and doctors and to promote the best possible outcomes. Unfortunately, despite ACR guidelines, in many instances PRD are not measured in any manner whatsoever. What would it look like if doctors and patients truly worked together toward common goals? We got a little glimpse...

My favorite session that I attended at this year's ACR Annual Meeting was a session by Dr. Iain McInnes of Glasgow titled "Treatment of Rheumatoid Arthritis When the Patient is Not Well." Arriving a few minutes late, I walked in to hear the words of a passionate (and humorous!) Scottish rheumatologist whose every word resounded with the truth RPF has been proclaiming: this is a systemic disease and each of the "multi-morbidities" (as he called them) must be recognized and treated as a part of the disease itself. Touching on cardiovascular risks, rheumatoid lung disease and even depression -- Dr. McInnes emphasized that each component must be measured, must be addressed-- "or the patient will die". It may sound dramatic, but the truth is that despite advances in treatment, the mortality rate of RD has not changed in recent years. Until we begin screening for and addressing other manifestations of rheumatoid disease, that statistic is not likely to improve.

We had the opportunity to talk with Dr. McInnes after his session and to thank him for speaking on this topic and sharing these simple yet important truths with other rheumatologists.  If every rheumatologist practiced the way Dr. McInnes preached, the landscape would be completely different.

There are a lot of great doctors in the U.S. and around the world who do take these things to heart, and we had the opportunity to meet many of them at ACR. While some doctors are still stuck in their own ways or have a hard time implementing proper guidelines due to time constraints and other pressures, we are hearing a powerful message that emphasizes measuring and treating the whole disease and working with the PRD to provide the best possible care and outcomes. It is this message that we want to continue to spread, and we hope to open the conversation so that we can overcome challenges to proper patient care.

Since its inception, RPF has been focused on changing the landscape of Rheumatoid Disease. We want things to look different -- better care, more effective treatments, better awareness, education & understanding -- and one day, a cure. Sometimes it may seem overwhelming, as there is so much work yet to do. But, as with any large-scale project, all we need to do is move one stone at a time. Working together, we can provide a better outlook for PRD, and one stone at a time we will work toward building our vision of a world without Rheumatoid Disease.

one stone at a time we will work toward building our vision of a world without rheumatoid disease

 

by KatieB

Personal Story: Roberta Wands

February 10, 2015 in Encouragement, Patient Input

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.

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Introduction:
My name is Roberta Wands. I am married, have two grown children and two grandchildren. I live in a small beach town on the beautiful Central Coast of California. My passions in life include exploring the coast and going to the beach; attending concerts; home decorating; stained glass and jewelry design; traveling; and spending time with my family.

When Were You Diagnosed?
I was diagnosed with Rheumatoid Disease in July of 2012.

IMG_1969What Were Your First Symptoms?
My first symptoms occurred on February 2, 2012. I woke up that morning and instantly knew something was very wrong. I was extremely weak and could barely get out of bed or walk. The day before had been such a fantastic, energetic day and it all took me by surprise. This was day 2 of a 30-day vacation I had long planned for.

In the weeks following that difficult morning, I noticed that my hair was beginning to fall out and the lymph glands in my neck were swollen and painful. I also lost my appetite and felt exhausted.

I went to the doctor twice during my vacation. After some lab tests, I was told I probably had an autoimmune illness and they recommended I return home early and see a Rheumatologist. By the time I went home, I was having shortness of breathe spells whenever I did any kind of activity. That was the scariest symptom for me. I now know that this disease was attacking my lungs.

That was my first flare and it lasted 9 weeks. After that, I had a few months of feeling pretty normal, followed by another flare a few months later. This time it affected my wrist, hands, and hips. I started to hurt all over and my body began stiffening up every day, making it hard to sit, stand, or lay down without pain. I purchased a body pillow to lie on because it helped soften the impact to my body. My Rheumatologist diagnosed me at that point and put me on Plaquenil.

What Is The Biggest Way Rheumatoid Disease Has Affected Your Life?
Living with Rheumatoid Disease has changed every part of my life. I use to be a very active, driven person always reaching for my goals and dreams. Now I have to be very, very careful about how much I do each day because activity is a trigger for increased fatigue, weakness, and pain.

I’ve also been unable to work for over 2 years. I’m just now beginning to gain confidence in my ability to work, despite daily symptoms. I am starting a bridal jewelry and accessory business.

0001MAWhat Is Your Experience With Treatments?
I am currently taking Methotrexate, Enbrel, Folic Acid, Vitamin D, and Tramadol. Even on these medications, I still have moderate disease activity. I can only imagine what I would feel like with out the medications.

Whenever I begin a new medication, it seems to work amazingly well for a short period of time. That reduction in symptoms usually lasts for about 3-6 weeks. My doctor said our immune system adapts to these medications and that decreases their effectiveness. However, the medications DO fight the progression of this illness. Off of them, I find I am unable to get out of bed on most days. When I first started Enbrel last year, it allowed me enough reduction in symptoms to go on my dream vacation to Jamaica. I’m grateful that I was able to do that before its effectiveness started to wear off.

What Do You Want The Public To Know About Rheumatoid Disease?
Rheumatoid Disease is an aggressive, systemic illness. It is not confined to the joints, and it is not arthritis. Much like Lupus, arthritis is only one of many symptoms. It can also attack our muscles, heart, lungs, and other organs. That’s why medications used to treat Cancer are used to fight Rheumatoid Disease. It attacks our whole body.

What Encouragement Or Advice Would You Give Someone Who Is Newly Diagnosed?
If you are new to the diagnosis of Rheumatoid Disease, be sure that you become well educated about this disease and its recommended treatments. Knowledge is power, and you must become an advocate for your care.

Also know that you are likely to go through a long grieving period as you learn how to cope with the many losses that come with a chronic illness. It is truly life changing in every way. And like anything that radically changes our life, it takes time to adjust. Be kind and patient with yourself. You will probably really miss the life you had before Rheumatoid Disease came along. One of the things I miss the most, are the long walks I used to take on the beach.

There is one thing that has helped me deal with all the losses and changes this disease brings. One day I decided to stop focusing on what I could no longer do, and started focusing on what I COULD DO. That shift in perspective has been very helpful. I feel more empowered in my life as a result.