Saturday, March 21, 2020

Take this quick survey to help scientists look into plaquenil as a potential coronavirus treatment!

Many people in the arthritis community have already heard this interesting news: hydroxychloroquine (Plaquenil) - a medication routinely used to treat rheumatoid arthritis, juvenile idiopathic arthritis, and lupus - is now being considered as a potential treatment for COVID19. 

Stefano Volinia, a scientist at the University of Ferrara in Italy, is interested in learning more about this potential treatment. He sent me an email saying that he thinks scientists can learn a lot about the efficacy of this drug towards COVID19 simply by assessing the spread of the virus among patients who already use these medications routinely. He asked me to share a quick survey - only 3 questions, plus age and gender - with my community of individuals living with arthritis to help with their efforts. Here is his message:
Help the world fight Coronavirus!

Do you use Plaquenil, Aralan, or chloroquine?

A common drug, called Plaquenil, has been shown by scientists to block the coronavirus in test tubes. Many people worldwide use this drug, or its generic hydroxychloroquine (HCQ), to treat lupus erythematosus or rheumatoid arthritis. Other people use a similar drug (Aralen), chloroquine, for malaria or Amebiasis.

I work at the University of Ferrara (Italy). Like many other nations in the world, we are now hit hard by coronavirus. The hospitals are more and more stressed by the ever increasing number of patients. The pandemic is now expanding worldwide. Large scale studies for the efficacy of this drug against Coronavirus are not yet available. Even if you are not using any of these drugs, you can be part of the solution!

Simply answer 3 questions and help to stop this deadly disease, called COVID-19!

Many thanks!

Please share this survey with anyone who might be able to help!

Friday, March 13, 2020

LaGrippe Research Opportunity for Patients with RA or PSA

I wanted to share an opportunity to participate in paid research with LaGrippe Research for patients living with rheumatoid arthritis or psoriatic arthritis. 

I've communicated with Alex Lampe at LaGrippe Research, who told me that all information shared through this study will be used for research purposes only, and will be kept strictly confidential. This is not a clinical trial and at no point will anyone be selling anything. The study itself is a double blind study. Results will be used to advance knowledge, marketing, and understanding within the field of arthritis research. 

As an additional disclosure, LaGrippe has agreed to compensate me $25 per person who qualifies through the link below and participates in the study. If I receive any compensation for this project, it will go towards funding additional resources for Mamas Facing Forward - I am particularly interested in having funding so I can pay the writers that contribute to the site! 

Here is the info from LaGrippe about the study:

Hi! We're LaGrippe Research and we're currently working on an Rheumatoid/Psoriatic Arthritis Study. We're looking for individuals who wish to share their personal journey with arthritis to participate in a 45-minute web assisted phone interview. Those that qualify and participate will be compensated $100 as a thank you. We will be conducting these interviews March 16th through March 31st.

If you are interested, please fill out our preliminary questions online here: https://www.surveymonkey.com/r/NWZY73V 

If you have any questions, please contact Alex at 224-360-7929 or email alexander@lagripperesearch.com 


Wednesday, March 11, 2020

Rheumatology Nurses Society Psoriatic Arthritis Project

I wanted to share an opportunity for patients living with psoriatic arthritis (PsA) to contribute to a project with Rheumatology Nurses Society (RNS). I agreed to spread the word because I think RNS is a great group of healthcare providers doing important work towards giving patients more of a voice within healthcare, and I think the program they are offering could be beneficial to patients living with PsA. I have not been compensated for sharing this information. Here is the information I have been given about this project:

We are launching a brand-new program this month that is entitled Dear Diary: Unlocking the Secrets to Better Care of Patients with Psoriatic Arthritis. We are looking for 50 patients with psoriatic arthritis who are interested in participating in this 12-week initiative.

In this program, patients will complete a weekly online diary entry where they will be encouraged to write about a variety of topics related to their disease. Weekly prompts will offer suggestions on various topics to tackle, but participants will have the flexibility to write about anything on their mind that is related to their disease. Please note that, at least in this initiative, we are only enrolling patients with psoriatic arthritis. There may be opportunities for patients with other rheumatic conditions in the future.

Each enrolled patient will be paired with one or more healthcare providers. These providers will not receive any information related to the identity of any patient beyond their first name. They will only receive an email when their matched patient has submitted a diary entry, and they will then be asked to write a response. Due to privacy concerns, provider responses will not be shared with participating patients directly. However, our project administrator (me) will review all diary entries and compile an electronic document at the end of this project that contains a variety of patient diary entries and provider responses so that all participants can get a sense of what patients with psoriatic arthritis have been writing about and how the healthcare provider community responded to some of the challenges they have been reading.

Our hope is that participants will find that jotting down their feelings and emotions while emptying out some of the clutter in their head will be extremely helpful. Our hope is that participants will submit one weekly diary entry during each week of this project. It is OK to skip a week or two as personal circumstances arise, but we’d like to find participants who will be as active as possible on our platform.

Anyone interested in participating in this project can click here (https://www.surveymonkey.com/r/KNP8575) to enter their contact information. We hope to complete enrollment and begin this project within the next 2 weeks, so someone will contact folks who register shortly. If anyone has any questions or would like any further information, they can feel free to contact Sadie Montanus, RNS Education Coordinator, at sadie.montanus@rnsnurse.org.     

Tuesday, January 7, 2020

Everyday Health's "10 Arthritis Blogs to Watch in 2020"

Happy New Year! I'm honored to kick of 2020 by sharing that I've been featured on Everyday Health's list 10 Arthritis Blogs to Watch in 2020. It's an honor to be featured alongside these other amazing bloggers, who are both honest and uplifting when it comes to life with arthritis.

Wednesday, November 20, 2019

Mamas Facing Forward at the 2019 American College of Rheumatology Annual Meeting

I was recently lucky to have the opportunity to travel to Atlanta, Georgia to attend the 2019 American College of Rheumatology Annual Meeting (ACR). While it was my sixth year attending the conference, this was the first time I attended officially representing Mamas Facing Forward and as a Patient Partner with the Arthritis Foundation. I'm very glad to have had the chance to represent patients at this important conference - particularly those who are or want to become parents.

Arthritis Foundation Patient Partners getting to work at ACR!


I'm pleased to share that there were multiple sessions at ACR this year focusing on issues of reproductive health for rheumatic disease patients - many more than in previous years! I will have some detailed articles about some of those sessions in the coming weeks. In the meantime, I wanted to share a just a little bit about the experiences of patients at ACR this year.


The Arthritis Foundation had a booth in the exhibit hall at ACR featuring posters from their patient partners - to help conference attendees understand the importance of the patient perspective and the real human impact of rheumatic diseases. In my poster, I shared the impact that rheumatoid arthritis has had on my family - and on the process of starting my family.

At the Arthritis Foundation booth in the Exhibit Hall at ACR



My poster at the Arthritis Foundation booth in the Exhibit Hall at ACR


The Arthritis Foundation blog published several articles featuring the perspectives of their Patient Partners at ACR this year. You can find them here:
I also took the opportunity to chat with the folks at MotherToBaby about the important work that they do. MotherToBaby is the nation’s leading authority and most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding. You can learn more about MotherToBaby here.

With Linnette Dyer at the MotherToBaby booth in the Exhibit Hall at ACR.


Lastly, while I was at ACR I had the opportunity to record a podcast with the International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA). The podcast focused on society's expectations for moms and the importance of pregnancy planning when living with a chronic illness - and how medical providers can help with this process. I'll be sure to share more when the podcast goes live!
Recording the AiArthritis Voices 360 Podcast with Tiffany Westrich-Robertson and Deb Constein of the IFAA and Linette Dyer of MotherToBaby
It was a very exciting conference, particularly as it serves as proof that resources and support is starting to improve for moms and moms-to-be living with chronic illnesses! More detailed information to follow!

This information is brought to you by Mamas Facing Forward and is not sponsored by, nor a part of, the American College of Rheumatology.

Thursday, November 7, 2019

Making decisions about arthritis, medications, and pregnancy— how do you do it?


 
From Mary:
As a researcher and mother to two girls who has experienced being diagnosed with cancer post-partum, I have a unique understanding of the challenges of making personal health decisions when growing a family.

From Nevena:
As a pharmacist and researcher, I am all too familiar with the lack of information on the safety of medication use in pregnancy and I want to change this narrative.    

To do this, we need your help!

We reached out to Mariah to help spread the word about our research study on how women with rheumatoid arthritis make decisions about taking medications before and during pregnancy. Our research has shown that women with rheumatoid arthritis will often stop medications when they become pregnant1 and that they are turning to online communities for support and advice about using medications during pregnancy2. We know that finding the right information about taking medications to safety and effectively manage rheumatoid arthritis is challenging and we want to take the stress out of this process by helping healthcare teams better support women so that they can focus on their pregnancies.


If you are a woman living anywhere in Canada, are between 18-50 years old, have a diagnosis of rheumatoid arthritis, and can communicate in English or French, please consider participating in their study. Your participation will involve a focus group and/or individual interview conducted online, over the phone, or in-person and you will receive a $25 gift card for each interview you participate in as a token of appreciation.

If you are interested in participating, please follow the link: http://tinyurl.com/MOTHERSUBC

For more information, please contact Nevena Rebić, the study coordinator, at: nevena.rebic@ubc.ca or 604.822.5697.


ABOUT AUTHORS:

Dr. Mary De Vera, PhD is an Assistant Professor at the University of British Columbia and Canada Research Chair in Medication Adherence, Utilization, and Outcomes. She is an expert in medications and pregnancy in arthritis.

Nevena Rebić, BSc(Pharm) is a pharmacist and health services researcher at the University of British Columbia who is committed to supporting women access quality reproductive health information and services.


Photo description: Dr. Mary De Vera (right), Louise Gastonguay (centre, French Study Coordinator), and Nevena Rebić (left).  This study is the team’s baby.

Monday, October 7, 2019

Supporting #ArthritisAtWork

One of the more stressful aspects of living with arthritis can often be figuring out how to manage arthritis and daily life at the same time. For me, this issue has appeared mostly when it comes to motherhood - which is why I started Mamas Facing Forward.

But for those who work outside the home, there's also the issue of how to manage arthritis in the workplace - such as figuring out what adaptations might be necessary, deciding when to reveal your arthritis to your boss or co-workers, or making sure you understand your workplace rights.

Laurie Proulx has lived with Juvenile Rheumatoid Arthritis for 28 years and it is her experiences that led her to the Canadian Arthritis Patient Alliance (CAPA) where she advocates for increased arthritis awareness and the adoption of more inclusive, patient-centred policies and practices. She is currently a Board Member and 2nd Vice-President with CAPA and has been actively involved in the organization for over 10 years. In this role, she represents the patient voice on various health policy issues, led a project on pregnancy and parenting with arthritis and arthritis in the workplace, and works as a patient partner in research. Laurie lives in Ottawa with her husband and two children.. Here, she shares the experiences that led her to the development of the Canadian Arthritis Patient Alliance (CAPA) workplace resources you'll find below:

I’ve lived with rheumatoid arthritis since childhood so I know all too well how this disease affects every aspect of life. I had difficulties in school, it affected my family, and it influenced my career choices and participation at work. Early in my career, I pushed myself to ‘fit into’ the workplace but looking back, I know it negatively affected my health. I never spoke about arthritis with my employer until I had children - I couldn’t manage the disease with all of life’s new responsibilities as a parent.
I knew that if I was having difficulties at work, others were too. I volunteer with the Canadian Arthritis Patient Alliance (CAPA) and I pitched the idea for a workplace project to our Board of Directors who all live with arthritis. They were overwhelmingly supportive – many on our Board have struggled to stay employed and healthy.

The first step of the project was to launch a survey to better understand the workplace challenges of people living with arthritis and what they’ve done to stay in the workplace (you can view a poster on the results here). Unsurprisingly, 85% of people with arthritis reported that arthritis affects them in the workplace. Some of their key challenges were that work takes them away from life activities, and they have difficulties in staying focused due to fatigue. People were also asked what worked for them and how effective personal and workplace adaptations work them. These survey results informed the development of workplace resources to help people with arthritis at work. The workplace resources were reviewed by Dr. Arif Jetha, a Scientist at the Institute for Work and Health in Toronto, Canada who studies how to support people with disabilities in the workplace. 

The workplace resources are organized into four different modules:
  1. Self-care for work - it describes how you can adjust non-work activities and manage your arthritis to better participate at work.
  2. Adapting the work environment for arthritis - it describes common workplace challenges and helpful workplace accomodations.
  3. Knowing your workplace rights - it describes the laws in Canada to accomodate people with disabilities at work. Although this information is specific to Canada, you can check out a disclosure checklist on page 3 to guide you in deciding whether to disclose information about arthritis to your employer.
  4. Workplace wisdom from patients (infographic) - this is a crowd sourced solution based on the advice provided by close to 400 people living with arthritis.

The project isn’t over either – CAPA is hosting a Twitter Chat
on #arthritisatwork on World Arthritis Day. 
The Twitter Chat will be on October 12 at 1 p.m. Eastern. 
We hope to see you there! 
 

Monday, July 8, 2019

RESEARCH OPPORTUNITY: KickStart30: A 30-Day Intervention for Patients with Rheumatoid Arthritis

I'm a big fan of research aimed at improving the lives of people living with rheumatoid arthritis, so I wanted to share this research opportunity from the University of Texas at Austin:


The purpose of this study, “KickStart30: A 30-Day Intervention for Patients with Rheumatoid Arthritis,” is to explore the efficacy and feasibility of an integrated, prescriptive, and trackable wellness intervention combining five wellness elements including exercise, mindfulness, sleep, social connectedness, and nutrition. Eligible participants include:
  • Adults (18+) interested in improving their overall wellness
  • Received a diagnosis of Rheumatoid Arthritis (RA) from a Rheumatologist
  • Currently taking a biologic medication or a JAK inhibitor for the treatment of RA including one more more of the following: Orencia (intravenous infusion or subcutaneous injection), Humira (subcutaneous injection), Kineret (subcutaneous injection), Cimzia (subcutaneous injection), Enbrel (subcutaneous injection), Simponi (subcutaneous injection), Simponi Aria (intravenous infusion), Remicade (intravenous infusion), Kevzara (subcutaneous injection), Rituxan (intravenous infusion), Actemra (intravenous infusion or subcutaneous injection), Olumiant (oral administration), Xeljanz (oral administration)
  • Must not be pregnant or plan to get pregnant during the 30-day study
  • English-speaking
  • Must have access to a reliable Internet-enabled computer
  • Must possess basic computer skills
The study involves participating in a 30-day integrated, prescriptive, trackable wellness intervention,
which includes five wellness elements: exercise, mindfulness, sleep, social connectedness, and nutrition. Additional program requirements include:
  • Implementing 5 wellness interventions daily during the 30-day study
  • Documenting daily online adherence
  • Completing daily HERO (happiness, enthusiasm, resilience, and optimism) exercises to improve your mental wellness
  • Completing online program forms prior to beginning the program and again at 30-days upon completion of the study
All information collected will be kept confidential. Participation is completely voluntary and can be
discontinued at any time without repercussion. There are minimal risks to participating in this study.

Potential benefits that participants may expect from this study include no-cost wellness
information/practices for both physical and mental wellbeing. You will also help researchers in the
advancement of research regarding wellness as a clinical and community-based intervention.

Researchers: Drs. Saundra Jain and Donna Rolin
To volunteer or for more information, please contact Study Personnel at 855.266.9222.
Prior to calling, please watch the study overview video:



Tuesday, April 23, 2019

Healthline's Best Rheumatoid Arthritis Blogs of 2019

I'm honored to be selected as one of Healthline's best rheumatoid arthritis blogs of 2019 - alongside some of my favorite people! 

You can check out the full 2019 list here.

Tuesday, April 2, 2019

Brain Fog and RA - What Do Researchers Know?

While "brain fog" isn't a medical term, I've heard anecdotally that many people living with RA have experienced it themselves....As it turns out, there has been some research on this subject.