RA Patients: Have Faith, Stay Positive, Rely on Family and More…
“Rheumatoid Arthritis has made me a more compassionate caregiver to myself.”
This is how a patient on our platform answered the question “How did the diagnosis of RA change you?”
Jessica came on FindMeCure to look for a cure for her severe RA, that has begun to worsen her quality of life to an extent that she didn’t want to bear it anymore. Of course, she knew that clinical trials are a risky path, but she also knew there is no cure for RA yet and wanted to get access to new therapies as soon as possible.
The whole team of FindMeCure is passionately dedicated to not only help patients with various conditions find suitable clinical trials but also to speak individually to every single patient, to understand their pain and how we can actually help.
While we were supporting Jessica with information and contacts in order for her to be accepted in a suitable clinical trial faster, we also cared about her and her pain.Rheumatoid Arthritis in a Nutshell
As we’re speaking, it turned out that people living with RA are a significant part of those interested in clinical trials in general. It was also clear – this group of people is brave, strong, disciplined, willing to share experience and help each other. So, could we do better than become the transmitter to all this energy?
If you are such a person, please, keep reading further.
Many people like you and Jessica have shared their stories and know-how on coping physically and emotionally with RA. No, actually not only coping but learning how to never give up and fight for the right to control their own bodies and lives
We asked them what their biggest challenges are, where they find strength and where their main driving force is hidden. We believe this is a knowledge that must be shared and so to inspire people with RA and other autoimmune diseases to find and also be sources of hope.
But before we share it with you, (with the consent of each of them, of course) here is something else that we believe important to mention.
We felt thrilled how many of the RA fighters confessed they didn’t know many others like them. At the same time, more than 400K people in the UK alone, and around 1.3 million in the US have the disease. So, we asked ourselves, how is that possible?
It seems, most of the people are hiding their diagnosis out of fear they won’t be understood by those who lack empathy or are searching for visual signs of the illness. When the visual signs finally arrive, the joints and other organs as well begin to deform, mobility decreases along with the options for new social contacts.
RА is painful, but it might be lonely in addition. The good news is that as long as there are people who care, even thousands of miles away from you, you are not alone. Here are some RA stories and reflections of warriors like you. Some are shorter, some are longer, but they are all real. So is yours. If you feel like it – share your story in the comments or at firstname.lastname@example.org. We will make sure it reaches the ones who need it the most.
I have rheumatoid arthritis which has attacked my liver, kidneys and lungs. I fight for breath and I am permanently in a wheelchair now. Rheumatoid does not affect everybody in this way. I am just one of the unlucky ones. Any form of Arthritis is so debilitating and it is very difficult to explain to people how you are feeling. I hope and pray that very soon they will find a cure.
I was diagnosed with rheumatoid when I was 24, so have had arthritis for 45 years now. I think it’s a case of being used to it and pain somewhere in my body every single day in life. I saw a consultant when I was 27 and he told me if I lay down to it I’d be in a wheelchair by the time I was 35. It made me more determined to try and do as much as I could as long as I was able to. I have to say many days over the years I have struggled and have occasionally been bed ridden but when does subside I get up and try and get on with things again. It is hard sometimes but I try to stay positive.
Cope…I’m still working on that. I have not had a full night’s sleep in two years. I just keep going, I feel if I stop, there will be no more going. Ibuprofen, methotrexate, steroids and hydroxychloroquine are the secret to my success so far. I have always been an active woman. Finding it difficult to come to terms that I cannot do things I used to do. Not so long ago. But I do have my faith… I will go as long as the good Lord lets me.
Family and friends are my support system. Most of my information about RA I have gotten from sites such as this one. I live in a very rural area, which limits RA care. And I really didn’t understand what I had or how to deal with it. Most is trial error, and learning my limits.
I take cocodemol and supplements. On really bad days – tramadol. I’ve been to pain management classes. Physiotherapy, now I’ve accepted that I have fibromyalgia and do my best to manage the pain myself. Grin and bear it.
We at FindMeCure truly believe that a cure, a better treatment, a new hope for RA and other currently incurable conditions are on the way. One of them might be even in development right now with the priceless input and crucial participation of patients. Volunteering for clinical trials, no matter for RA, Diabetes, Cancer, HIV or other currently incurable illnesses, isn’t only a brave act, but it can be also a shorter path to the much needed for many of us innovative therapies.
So if you’re interested in all the available options when it comes to RA or other conditions, we’ll do our best to have them in handy for you. Type your conditions in the field below and take a look at what the researchers in more than 3000 locations have to offer.