Luck Fupus

A lupus blog…

Everything is awesome! Everything is cool when you’re part of a team…

Hi My Loves,

I’ve been balls deep in conferences, I’m actually typing this as I listen to a presentation on market research in healthcare.

It is as exciting as it sounds.

I’m not great about summarizing the conferences I attend and sharing what I learn; I usually show a few photos, tell you I rocked it, the end. I always live-Tweet during the event, but if you aren’t on Twitter… well, you miss all the fun.

Conference season started in early March, and since then I’ve participated in 5 events, whether it be on a panel, attending as a patient scholar or delivering a keynote talk.

That’s right- keynote talk! We’ll get there in good time.

On March 2-3 I went and was a panelist at the Patients As Partners conference in Philadelphia, PA. I went as a spectator last year, but this year I was lucky enough to be asked to participate.

Patients as Partners is accredited by Patients Included and addressed what matters most to patients to enable them to support clinical research:

  1. Understanding and incorporating the patient’s voice in designing clinical trials and developing a clinical endpoint
  2. Vastly improving the patient’s entire experience in a clinical trial
  3. Empowering the patient in the new medicines development process

I was a panelist on Patients View on why they are/are not Participating in a Clinical Trial, which explored the thought processes behind entering a clinical trial. I’ve been on quite a few panels over the last few years, but this one, by far, has been my favorite to date.

To be honest, I didn’t have much to contribute to this panel; of the 4 of us, I was the only one who has never participated in a clinical trial. I felt like the nerd getting picked last in gym class.

Sadly, this is a hat I wore many times growing up. Ahhhh, the life of a kid with a bad heart who couldn’t play sports.

You know what’s funny? I’m a million times stronger than all of those ass-clowns who made fun of me- there’s no way in hell any of them would have survived what I did.

I digress.

On the panel were two of my favorites, Cindy Chmielewski of Myeloma Teacher fame. I met Cindy in 2015 at a conference, and we discovered we live less than hour away from each other! Cindy is a survivor of Multiple Myeloma, a blood cancer, and now spends her days advocating, kicking ass and taking names.

My patient advocate BFF is T.J. Sharpe, a guy who I sometimes wonder is secretly Superman. T.J. was diagnosed in his mid-twenties with early stage melanoma (wear your sunscreen, kids), and then 2 weeks(ish) after his wife gave birth to their son, he was diagnosed with stage 4 melanoma and chock full of tumors. If my memory serves me correctly, I think he was given 2 years to live, and that just wouldn’t do. He’s been through hell and back, and maybe back to hell again in regards to his treatments; 2  (one that failed him)clinical trials, six surgeries, brushes with death where I’m certain he saw the light a few times.

Or maybe that was the sun when he was laying on the beach.

Listen to your old Uncle T.J., wear your sunscreen!

I met T.J. at a conference in October last fall. We had never met prior, emailed the morning of the conference and he said “I’m the funny-looking bald guy in the green shirt, come and find me during lunch.” There was more than one funny-looking bald guy at the conference, because I was smiling and giving eyes to the WRONG FUNNY-LOOKING BALD GUY for about 4 hours until I got to meet T.J. face-to-face.

No doubt the other guy thought I had Tourette’s.

When I got to talk to the correct funny-looking bald guy
T.J.- “Where are you from?”
MJ- “Philly.”
T.J. “I grew up around here, where did you grow up.”
MJ- “A small town in NJ that you’ve probably never heard of.”
T.J. “Try me.”

Turns out T.J. grew up 5 minutes from my parents’ house in a small town directly next to mine. His best friend was the older brother of a friend who used to drive me to and from high school. Our high schools were rivals (Bishop USELESS), we ate at the same diners, knew a lot of the same people- yet somehow, never crossed paths until now.

Being that we both drank from the same water tower as children, it’s definitely NOT a coincidence we each went on to develop our smorgasbord of medical mishaps. Science should study us.

T.J. blogs for Philly.com at Patient#1, and lives in Ft. Lauderdale with his wife Jen and their 2 adorable kids, Josie and Tommy.

Oh, and those 2 years his oncologist gave him? Yeah, he told that guy to suck it.

Typical South Jersey for ya.

Marla & T.J.

Back to the panel. As I mentioned, I didn’t have much to contribute to the conversation, except for the reasons WHY I haven’t been able to participate. Being that I’m basically the first generation of children born with congenital heart defects who went on to not only survive but THRIVE into adulthood, now that we are living long enough to develop things like cancer and diabetes, doctors don’t know what to do with us.

My point is, due to my heart defect, I have yet to find a trial that I’m eligible for. It’s frustrating, actually. I’d like nothing more than to participate in a study, but in the wise words of Cher Hororwitz, “I was brutally rebuffed.”

So I spoke out about it. Made a point that drug companies must play fair, and accommodate those who are ready and willing. Illness is not one size fits all, yet pharma places their parameters of drug trial eligibility around a very small breed, the “ideal patient” who doesn’t have co-morbidities and is the textbook definition of a specific disease; I know A LOT of patients, and let me tell you, that patient doesn’t exist. The advent of improved surgical techniques and better drugs ensured I made it to adulthood. And now that I’m here, burdened with all these “adult problems,” I’m shit out of luck.

That shouldn’t be OK to anyone.

I spent my childhood more or less being a guinea pig in the field of congenital heart disease, so why can’t I now if I choose to do so?

The esteemed panel…

I have a lot of photos taken from the number of conferences I’ve attended, but this perfectly captures the essence of what it is I do- make them laugh, make them laugh, make them laugh. Sure, it’s my defense mechanism, but I’m up there sharing some of the darkest moments of my life to a roomful of strangers. I’m almost certain that shutter was pushed moments after I rubbed T.J.’s head when I mentioned I lost my hair.

Conferences tend to be very long days, especially when you’re a patient. Sometimes the bathrooms are on the other side of the building (awesome when you take diuretics and have mobility issues), the temperature in the main room can be anywhere from 50-90 degrees, so one moment I’m stripping and the next I’m bundled in my scarf, gloves and coat, quarters are very tight… it’s not ideal. It’s not always comfortable, and when you add pain, brain fog and fatigue, all the while stressing that you’re going to say something dumb in front of 500 people (who me?), sometimes I zone out during some of the talks.

I was having one of those moments, and all of a sudden someone mentioned ‘lupus,’ and for once, it wasn’t me. My head twisted around so fast, not sure how I don’t have whiplash. Besides me, there was THREE other amazing women there who were representing the lupus community, and the work they do makes mine look like peanuts. I consider them the Helen Mirren’s of lupus; they’ve been doing what they do for a long time.

Patients As Partners was the best way to kick-off conference season!

Katheen A. Arnsten (L)- President/CEO Lupus & Allied Diseases Association Tiffany Westrich-Robertson (C)- CEO International Foundation for Autoimmune & Autoinflammatory Arthritis

Credit of all below photos: The Conference Forum

My sprit animal

3 patients listening to The Conference CEO, Valerie Bowling

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