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Introducing NEW RPF Partner, imaware™, offering the first in-home health test for RA

The Rheumatoid Patient Foundation is excited to announce a partnership with imaware™, a new at-home health test for rheumatoid arthritis. The imaware™ health test allows people to take their healthcare into their own hands and order a screening test for rheumatoid disease biomarkers, without a doctor or lab visit. Simply order a test online, receive […]

The Rheumatoid Patient Foundation is excited to announce a partnership with imaware™, a new at-home health test for rheumatoid arthritis. The imaware™ health test allows people to take their healthcare into their own hands and order a screening test for rheumatoid disease biomarkers, without a doctor or lab visit. Simply order a test online, receive a kit to do a finger prick and collect a small sample of blood, mail the kit back and receive your results within days, in an easy to read and easy to share report.

imaware™ understands the importance of early detection in rheumatoid disease and is working hard to make that easier. The best health outcomes for people with rheumatoid disease (PRD) have been consistently linked to getting early diagnosis and treatment. Unfortunately, RD can be a tricky illness to diagnose, with symptoms that come and go or that are seemingly unrelated. It takes the average American two years to get diagnosed. By doing an at-home test, you will be able to provide your results to your doctor and more easily advocate for your own healthcare. RPF’s mission is to improve the lives of people with rheumatoid disease, and a big part of that includes finding ways to get PRD diagnosed and treated as soon as possible.

The imaware™ test looks for certain antibodies in your blood that may be indicative of Rheumatoid Disease. One of the antibodies the test screens for may even show up in the results 6-12 months before you feel the onset of symptoms. This could be truly life-changing for PRD, allowing them to seek early treatment to hopefully prevent progression of the disease and, hence, damage and disability.

We are looking forward to working with imaware™ to advance earlier diagnosis of RD. imaware™ is committed to RPF’s mission and will be supporting our awareness and education programs so that together we can work toward the day when no one suffers from rheumatoid disease.

To learn more about imaware™ and the at-home RA test, visit their website at: https://imaware.health

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imaware™ Partners with Rheumatoid Patient Foundation to Promote Awareness and Early Diagnosis of Rheumatoid Arthritis

Makers of at-home health test for RA offer a $10,000 matching grant for Rheumatoid Awareness Day Houston, TX – January 29, 2019 – imaware™, an at-home testing platform for chronic illness and disease, including rheumatoid arthritis, designed by healthcare company Microdrop, today announced it has partnered with the Rheumatoid Patient Foundation (RPF), working together toward […]

Makers of at-home health test for RA offer a $10,000 matching grant for Rheumatoid Awareness Day

Houston, TX - January 29, 2019imaware™, an at-home testing platform for chronic illness and disease, including rheumatoid arthritis, designed by healthcare company Microdrop, today announced it has partnered with the Rheumatoid Patient Foundation (RPF), working together toward earlier diagnoses and improved patient outcomes.  The newly formed partnership of the at-home testing platform and leading patient advocacy organization for people with rheumatoid disease coincides with the arrival of the 7th annual Rheumatoid Awareness Day on February 2. To further support patients and RPF’s mission, imaware™ is sponsoring Rheumatoid Awareness Day by offering a matching grant for all donations to RPF from now through February 12, 2019, up to $10,000 USD. Donations can be made on the RPF website at: http://rheum4us.org/donate

"RPF's mission is to improve the lives of people with rheumatoid disease,” says RPF Founder and President, Kelly O’Neill Young. “With the medications available today, nothing improves outcomes as much as early diagnosis and treatment. The imaware™ test has the potential to help millions of people have more successful treatment and a better life."

“We believe that the imaware™ at-home rheumatoid arthritis test will help reduce the number of undiagnosed people with RA,” said Jani Tuomi, co-founder, imaware. “With a partner like the Rheumatoid Patient Foundation, we will be able to better engage with the patient community to educate, screen, and ultimately help patients engage their doctors sooner for diagnosis.”

Rheumatoid arthritis, or rheumatoid disease, is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. Rheumatoid Arthritis Day was established in 2013 by the Rheumatoid Patient Foundation as a way to address public lack of understanding of rheumatoid arthritis. The  goal of the partnership is to improve speed-to-diagnosis and treatment to help those impacted by the disease to access treatment faster and improve their health outcomes.

How imaware™ Rheumatoid Arthritis test works:

Three biomarkers commonly associated with Rheumatoid Arthritis are measured: rheumatoid factors (RF) and cyclic citrullinated peptides (CCP) biomarkers. The combination of these biomarkers has been demonstrated to identify the disease in its early development, even before symptoms may show. Available online at imaware.health for $99.00 USD, the test uses a small amount of blood obtained by a finger prick and is collected in a vial. People then mail the sample back in and within five days will receive their confidential test results via a secure portal.  The new imaware™ Rheumatoid Arthritis test expands upon the lineup of Celiac Disease screening and monitoring tests, and is currently available in the United States.

About the Rheumatoid Patient Foundation:
The Rheumatoid Patient Foundation is a 501(c)(3) non-profit organization dedicated to improving the lives of people with rheumatoid disease. RPF was founded in 2011 to address a significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and patient-centered research. For more information, visit http://rheum4us.org or follow RPF on Facebook or Twitter.

About imaware™

The imaware™ mission is to provide patients with the tools to drive awareness to chronic illness and empower patients to live a better and healthier life - sooner. Each imaware test is designed and validated alongside world-renowned doctors from the most prestigious medical research facilities including Dr. Timothy Niewold, Director of the NYU Colton Center for Autoimmunity, Dr. Kevin Deane, Endowed Chair for Rheumatology Research, University of Colorado Denver, Dr. Stefano Guandalini of the University of Chicago Celiac Disease Center, and Dr. Margaret Spitz and Dr. Melissa Bondy of the Dan L. Duncan Comprehensive Cancer Center at the Baylor College of Medicine.
For more information, visit us online at imaware.health

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Carmen’s Story

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 […]

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 mother of two grown children and an angel who I lost to SIDS when he was 2 months old. I am a wife to a very loving husband and veteran, a Nana to four beautiful grandbabies, and a cat mama to two beautiful crazy kitties. I am from a small town in Wisconsin, Beloit, and I live just north of there in Janesville, WI. My interests include Family (always and forever), animals, reading, sports (watching not playing anymore).

When were you diagnosed with RA/Rheumatoid Disease?

I was diagnosed in November 2018, but I believe I have been dealing with this for several years now but passed it off as just getting old.

What was your first symptom?

Being hospitalized with inflammation of my lungs, then again with my colon.

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

I have lost my job and I can not do the things I used to do anymore.

What has been your experience with treatments for rheumatoid disease?

Just started on a treatment of Methotrexate, so it's all new to me.

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

Rheumatoid Disease is not just about the joints, it affects your whole body and organs. It is very painful and debilitating, has an affect on your mental health as well.

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

I haven't, still working on it. Right now I am trying not to lose everything I have worked so hard for which is really hard when you have to chose to either pay bills or eat. I rarely eat because there just isn't enough in the budget.

What have you learned through living with rheumatoid disease?

I am not superwoman and I need to listen to my body.

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

Don't give up and seek all the help you can get.


Shortly after her story was published here, Carmen decided to write a letter to her local representatives in government to inform them about the realities of living with rheumatoid disease. Her letter is pasted below. For more examples of advocacy letters and advice on how to get the attention of your local representatives, please visit our advocacy page.

 

To whom it may concern, Tuesday 02/05/2019

Greetings & Salutations

My name is Carmen, I am 51 years old and recently diagnosed with a debilitating autoimmune disease called Rheumatoid Disease/Rheumatoid Arthritis (RA) & Sjogren's Syndrome. Most people think that RA is just arthritis however arthritis is just one symptom. This relentless monster has affected my lungs, gastrointestinal track, eyes, mouth, muscles, veins and of course my joints. This is a Systemic Autoimmune Rheumatic Disease, this is an umbrella that covers the two I have mentioned and several more.

This disease not only destroys your body & mind but also destroys your life. I was let go from my job at Grainger, a job I loved and doing well at. As a result of losing my job I am now behind on rent, car payment, bills and everything. I have reached out to work things out with my landlord (Integrity Investments Inc. out of Brookfield, WI) because I can get help with at least one month's rent and was approved for Section 8. Waiting on Section 8 to send me my orientation appointment date and I will get a voucher. I also planned on getting caught up on rent with my taxes. They turned down the help I was going to get and told me that I have to talk with their lawyers who I haven't even heard from yet.

I need my car, I love my car, it is my dream car and I'm close to losing it. I reached out to Nissan to see if there is anyway they could do to help me but I haven't heard anything back from them. I have had to allow bank accounts to close because of insufficient funds because I keep getting screwed by unemployment. I just can't catch a break!

Isn't it bad enough that I take oral chemo every week, can't make it through a store, do laundry, or even take a shower without becoming sick, running a fever and going through excruciating pain. I am so close to giving up because honestly is it really worth it when you are going to lose everything you worked so hard to accomplish to an incurable disease?

This is my final cry for help as I have pleaded for help several times before and to be honest I truly think no one cares. Is there absolutely no humanity left in this world?

P.S Wednesday, 02/06/2019

Went to ER today, running a fever, dizzy, trouble breathing, etc...I get home and there is two court papers tapped to my door from my landlord's lawyer. For the whole world to see, no privacy at all. Of course it's to late to call by the time I get in so I will be calling in the morning to see if there is any hope to work anything out with them.

 

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Reflections on ACR 2018

by Shannon Young

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.

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Jodi’s First ACR

As a brand new member of the Rheumatoid Patient Foundation Board, I was thrilled to be able to attend the 2018 American College of Rheumatology (ACR) Annual Meeting in Chicago this fall! The four-day event, highlighted rheumatology developments and drew medical professionals and researchers from around the world. It was an eye-opening experience! The amount […]

ACR 2018 – Coming Full Circle

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 […]

Eddie’s Story & Volunteer Experience

We at the Rheumatoid Patient Foundation believe that our personal stories are powerful tools of education and inspiration. We have asked several of our volunteers to share a part of their journey and volunteer experience with us after joining us at the American College of Rheumatology Annual Meeting. If you are interested in sharing part […]

2018 Scholarship Winners

For the past few years, the Rheumatoid Patient Foundation has run an annual scholarship program to support students affected by Rheumatoid Disease. Our goal has been to expand the program each year. This year, we have upped our Scholarship Program to award five $1,000 scholarships to students who are affected by Rheumatoid Disease. We’d like […]

Rheumatoid Disease Billboard Campaign

In 2017, RPF launched what is to our knowledge the first-ever Public Service Announcement (PSA) campaign for rheumatoid disease — utilizing donated billboard space from Lamar Advertising. Lamar has been a great media partner, participating with us in Rheumatoid Awareness Day, and helping us place longer-term PSAs on billboards throughout the country. Each of the […]

Patti’s Story

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 visitour story page. Tell us a little about yourself and your family — where you’re from, what you do, […]