4 posts tagged “advocate”

Member Christine’s Instagram takeover for World Lupus Day

Posted May 11th, 2018 by

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!)

Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way.

Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure.

“You make a living by what you get. You make a life by what you give.” —Winston Churchill

Finding the right treatment for lupus can be difficult. Most patients, myself included, will try a number of different medications in order to achieve remission. These medications, while they may help, can also have very toxic side effects. In fact, some of the side effects can be worse than the disease itself. I have had three drugs that have caused significant damage to my body. I now have hydroxychloroquine retinopathy, avascular necrosis and toxic encephalopathy as a result. Though scary, it is a reality for so many patients.

Despite the setbacks, the experience has taught me how important it is to advocate for yourself. As a patient, it’s your duty and your right to do your research. If you are uncomfortable with a drug or the side effects are too severe, make sure to speak with your doctor. Remember, no one knows your body better than you do.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” —Maya Angelou

Dealing with an illness isn’t easy, and going through it alone can make things even more difficult. Support is one of the most important aspects of dealing with any disease, including lupus. While family and friends can be a crucial part of your support system, I’ve found that it helps to seek advice from others not involved in your immediate circle.

Many people frown upon support groups as a place where people go to complain and commiserate, but most support groups are nothing like that. Finding other patients to connect with is an amazing experience. To be able to talk to someone who knows exactly what you’re going through makes all the difference in the world.

My support group is not just a support group — they are my confidants, my motivation, my inspiration and, most importantly, my friends. Regardless of your condition, I’d encourage you to reach out to other patients, both online and in person. There is so much that can be learned and shared among us.

“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” —Misty Copeland

With beauty playing such a pivotal role in our society, women are often criticized for changes in their appearance. About 90% of lupus patients are women, which makes dealing with the disease even more difficult since lupus can wreak havoc on both the body and mind.

The photos above were taken only one year apart and that adorable little girl is now a teenager. I had been on high-dose steroids and put on 70 pounds within the first month. I was unrecognizable and my self-esteem gone. At my heaviest, I weighed in at 220 pounds, all due to medication.

It’s not easy to go through the physical changes of the disease, but I’ve always found the light at the end of the tunnel. Looking back, I wish I had taken more pictures during that time. I missed out on so many memories because I couldn’t stand the way I looked. It took a while but I’ve learned to embrace myself, regardless of my weight.

“Beauty begins the moment you decide to be yourself.” —Coco Chanel

Recently, a friend of mine from high school passed away. My heart breaks for his family and wife. His death has brought to light the question of our mortality. As someone with a serious chronic illness, I have been told more times than not that my chances of survival are slim and I’ve even had my last rites read to me.

The thought of death is often far more real for those of us with chronic conditions. It looms in your mind and forces you to question the things in life that you thought were once so important. It’s a valid fear and a harsh reality, often dismissed by others. My post is not meant to be depressing, but rather to encourage you to live your life to the fullest, be happy and help others. With that, I’ll leave you with a final quote. Thanks for following along!

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” —Mark Twain

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Getting “Patients Included” right Part II: Planning a patient-centric event

Posted November 18th, 2015 by

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN). We recently spoke with patient Celeste Lee and Frank Hurst, MD, Medical Officer, Renal Devices Branch with the FDA, about the planning and consideration it took to make this event “Patients Included.”

While this was the first patient-centric event KHI has held, they’ve worked to include the patient voice in all aspects of the initiative. Kidney patients and kidney patient organizations are represented on the KHI Board of Directors, and this past year the KHI Board of Directors formed a KHI Patient and Family Partnership Council (PFPC) made up of only patients and their caregivers. The PFPC helps provide strategic guidance on how to engage and include patients, their families and care partners in KHI activities.

Celeste has had kidney failure from an autoimmune disease since she was 17. She’s been an advocate for decades and is now focused on patient-centered care. Celeste is also a board member on the inaugural PFPC and helps review potential projects from a patient and family member viewpoint.

“The way KHI works is that it brings everyone to the table – researchers, industry professionals, patients – and we ask what is it that we can do to improve research and clinical trials and ultimately, patient lives. We do this through specific projects like this workshop,” she says.

Involving patients from the get-go

As part of this particular workshop, KHI wanted to hear patients’ ideas and preferences on new devices to manage kidney disease. Before anything, though, they had to create an event that would provide the greatest value to patients that attended in person.

When we asked Frank and Celeste what goes into planning an event like this  they shared how they think it can be centered around the patient:

“Involving patients early helped us to realize the need to broaden efforts to educate patients on the topics of interest prior to having the workshop. This proved to be a critical step in the planning process,” says Frank.

“We realized it would save time to educate prospective attendees about the new devices via webinars before the workshop,” explains Celeste. “We ended up taking a three-step approach that started with a quick engagement video talking about what we wanted to do. We distributed this throughout the whole kidney community. At the end of the video, there was an invitation to sign up for the webinars. After the webinar we said – now we are going to have a day and a half workshop and we will provide travel grants. Over 50 travel grants were given, funded by KHI so patients could come from all over the country.”

Frank notes, “Although patients are medical device consumers, they rarely have an opportunity to influence products that come to market. The success of a new medical device is based on many factors, including the usability by patients. KHI provided a forum, which allowed stakeholders to hear about ideas and potential solutions directly from patients.”

Looking at it from all angles

While the main consideration was making sure KHI had set clear expectations to patients who attended from the onset, there were additional logistics to consider for the workshop to be as patient-centric as possible. The workshop agenda was arranged around patient treatment schedules and incorporated dietary considerations when planning the menu. Because some attendees are on dialysis or live with transplants, they needed volunteers on hand. KHI planners also made sure to ask for patient feedback throughout the entire event and had scribes in position to record it. This feedback was ready to be shared at the workshop’s closing and will be sent out in an executive summary as well.

“Patients especially enjoyed the small group sessions,” Frank says. “These were multi-stakeholder breakout discussions which tackled important questions such as unmet needs, device areas that need improvement, making clinical trials more patient-friendly, and assessing ways for patients, industry, and regulators to communicate and share feedback.  These sessions included many lively discussions where patients felt empowered to share ideas and come together to propose solutions.”

Patient advice for a patient-centric event

Celeste has simple advice for other organizations that want to have this level of patient inclusion in their events. “I think you start off with a really good planning team that includes patients so that they’re there to help figure out the challenges of bringing that population together. Most importantly – you need to prepare people to be a part of it. You’re not going to get anything of value if people come in cold. It’s about the patient being able to draw on their experiences to help move research forward so if they understand what’s expected of them going in, then the outcomes will be more valuable.”

Frank adds, “It is also important to consider the spectrum of the disease, and ideally include patient representatives from across the spectrum as they could have very different needs.”

“Then,” Celeste says, “the next step is getting them to share the developments within the greater community. Once patients are educated and engaged, they become empowered.”

For a look at the KHI’s 3-step plan, check out this presentation they shared with us! And of course, don’t forget to visit the site and connect with the more than 1,000 other PatientsLikeMe members living with chronic kidney disease.

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