I'm honored to be included in this HealthCentral list, alongside some of my favorite people in the chronic illness community!!
Tuesday, October 24, 2017
Saturday, October 14, 2017
I know I've said it before and I'll very likely say it again: medical research is so important to the lives of people living with chronic illnesses.
The way RA treatment has changed in just the past few decades is a perfect example of this concept. At first there wasn't much more than aspirin or cortisone to available to treat RA. These medications may have helped control pain and reduce inflammation somewhat, but they focused only on dealing with flares - not slowing down the rate of joint deterioration - so an RA diagnosis in those days almost certainly lead to disability and deformation. It wasn't until the 1980s that methotrexate, a drug that was already being used in higher doses to treat leukemia, was identified as a potential disease modifying medication for RA. And the first biologic, etanercept/Enbrel, wasn't even approved for RA until 1998.
Since then, eight more biologics have been developed (nine if you count tofacitinib/Xeljanz, which isn't quite a biologic), and more biologics and biosimilars are currently in the pipeline. These genetically engineered proteins target specific parts of the immune system that fuel inflammation, and thus offer patients even better potential outcomes. And none of this advancement would have been possible without medical research.
So I personally think it's very important to support medical research - and even participate if there are studies that work for you. For one thing, clinical trials can be a good way to expand your treatment options, which can be useful if you're struggling to find a currently approved medication that works. Many clinical trials also offer free medical care or even compensate participants.
There are also observational research studies - meaning you don't necessarily have to take a new medication or get any specific tests, but that you still can contribute your data to the greater good. I personally find observational studies particularly compelling as that's where most of the data about pregnancy and breastfeeding safety comes from! I participated in one during my second pregnancy and I'm currently enrolled in another one now. And I've benefited from the outcomes of these trials too - because I currently have way more treatment options during my third pregnancy than were available to me just a few years ago during my first.
If you're interested in participating in research, I highly encourage you to look into the option! But I will admit that websites like ClinicalTrials.gov can be a bit difficult to manage and understand. That's why I was interested to learn about Antidote - a technology and data company focused on helping patients and caregivers easily find, understand, and connect to clinical trials.
Their widget aggregates all the open trials and makes it much easier to search for ones that you might qualify for in your area. This service is free and none of the trials are given preferential treatment. Patient confidentiality is taken very seriously, and you can search and explore the database of current trials without any of your information being gathered or shared. The only time your contact information will be collected is if you find a trial that interests you and you request to learn more.
Check out the widget below and find out about medical research in your area in just a few simple steps!
Friday, October 13, 2017
Some of you may have noticed that last Friday came and went without my usual Facing Forward feature. The reason is that I've decided it is finally time to retire the series and move on to something else (mainly my work on the new Mamas Facing Forward website!!)
But before I move on completely, I wanted to take a minute to reflect back on the last two and a half years spent interviewing individuals living with various chronic illnesses. The Facing Forward series was intended to share the lives of people living with invisible chronic illnesses. In addition to spreading awareness, I wanted to help all of us see how we are similar and how we are different - and to remind everyone to keep moving forward, because none of us are alone!
Since my very first interview published on March 8, 2015 (my own!), the series has featured over 100 other individuals living with invisible chronic illnesses - as well as a handful of caregivers for children or spouses living with chronic illnesses. These individuals represented more than 110 different diseases and conditions, including (but not at all limited to): ankylosing spondylitis (AS), Celiac disease, COPD, Ehlers Danlos syndrome, endometriosis, fibromyalgia, Hashimotos thyroiditis, HIV, juvenile idiopathic arthritis (JIA), lupus (SLE), lyme disease, myalgic encephalopathy (ME, formerly known as chronic fatigue syndrome or CFS), postural orthostatic tachycardia syndrome (POTS), psoriasis, psoriatic arthritis, Raynaud’s disease, rheumatoid arthritis (RA), scleroderma, Sjogren’s syndrome, Type 1 diabetes, Type 2 diabetes, and ulcerative colitis. The series also touched on many co-morbid conditions that are often present with chronic illness, such as anxiety, depression, or issues with sleep.
Despite the fact that more than 100 different people answered the same set of questions, I think what surprised me most were the underlying themes of how we all we all work to keep facing forward, in spite of whatever our personal health issues may be. While most of us agree that it is important to give recognition to feelings of grief or depression, we also tend to make a real effort to focus on the positive aspects of life and practice gratitude, mindfulness, and thankfulness as much as we can. Our families, spouses, children, friends, pets, and loved ones also help us face each new day.
Many of us also find support by connecting with others who are living with the same or similar illnesses - as well as personally benefiting from advocacy work and providing much-needed support to each other. It is absolutely no easy task to keep facing forward every single day while living with a chronic illness, but I think the overall lesson to be learned here is that we are stronger if we work together - lending a hand to those of us who are struggling more at any given time.
To everyone who participated in this series over the last two and a half years, I want to offer my most heartfelt thanks for helping to share the importance of continuing to face forward!!
Wednesday, October 11, 2017
In almost a decade since my diagnosis, I've been lucky to have the opportunity to meet a lot of others who are also living with RA - both online and in person. And while we have a lot in common, one thing I've learned is that everyone has their own unique experience with RA.
That's why I was very excited when Healthline offered me the opportunity to be part of their new video series This is What Rheumatoid Arthritis Looks Like. I got to share my own personal perspective of what it's like to live with RA - as well as shining a light on the added challenges faced by moms living with chronic illnesses.
The series also gave me - and gives you! - the opportunity to take a peek into the lives of two other amazing individuals living with RA, whose lives are so similar and yet so different from my own! One is Arthritis Ashley, a blogger I've been aware of for years but never had the chance to interact with until I happened to recently meet her at a patient summit in New York City! I've always loved her positive approach to living with chronic illness, as it's one I embrace myself! The project also introduced me to an author and blogger I hadn't heard of before, Daniel Malito. I'm excited to get to know his work, and I always love having more representation for men who are living with RA. You can check out all three of our Healthline videos describing what RA looks like here.
My own video is also included below, and I have to say that I'm pretty happy with how it turned out considering all the chaos in my house the day the film crew joined me! I also want to add the disclaimer that the film crew did an amazing job making me look like the "perfect" mom. They took footage of me taking my boys to pick up our farm share, cooking with local organic produce, and the whole family playing cooperatively together with trains. But for all the other moms out there, please know there was a lot of chaos and screaming in between these shots - and 20 minutes after the film crew left we were all eating frozen pizza for dinner and watching monster trucks on YouTube. Just want to keep it real haha! ~;o)
Monday, October 9, 2017
Thursday, October 5, 2017
The good news is that the short answer to this question is no. You can’t pass RA directly to your children. However, the long answer to this question is a bit more complicated. While I've addressed this issue before, this article includes some updated statistics from the American College of Rheumatology.