So if you’ve been following my story (and for the sake of this article I’m going to assume you have), you know that over the summer of 2019 I was diagnosed with IgA Nephropathy, a disease that while considered rare compared to some of the sexier diseases, is also the third leading cause of Chronic Kidney Disease (after Diabetes and High Blood Pressure).
Having been diagnosed with a disease I knew little about, yet knowing it can and often does have serious implications for the patient long-term, my first reaction was, well, paralysis. This was my first time being faced with a life altering – and potentially life threatening – disease. This was the sort of thing that only happens to other people, not me. I always assumed I was going to go out the same way I had lived – in a blaze of stupidity. Like falling down an exposed manhole in busy downtown Haverhill. Or being attacked by a hungry black bear (also in busy downtown Haverhill for some odd reason). Getting taken out by a disease? That’s for other people.
Now as it turns out IgAN – and Kidney Disease in general – while serious and potentially fatal is NOT an automatic death sentence. In my initial state of paralysis I sat there contemplating the worst case scenario. In hindsight I think this is what you normal people refer to as anxiety. But eventually I was going to have to snap out of it and move forward. First I was going to have to take on the seemingly insurmountable task of telling loved ones. But tell them I did and suddenly my problem became their problem too for better or worse.
Time To Act
My thought process turned from “Why me?” to “Where do we go from here?”. I was as I am now, constantly researching my disease and trying to educate myself. The shock was wearing off and I did not want to just sit on the sidelines and wait for other people to make progress. For all my inherent laziness, at the end of the day I would like to be part of the solution. So while I was trying to get educated on the disease(s) of CKD, I was also trying to get myself caught up on all the volunteer opportunities out there.
As luck would have it by the time I started really paying attention, I found that the National Kidney Foundation was having it’s annual Boston Kidney Walk in just a few short weeks. I was familiar with fundraising walks and similar events for other causes such as Cancer, but I had only contributed and never paid much attention to how these events functioned. Regardless, I signed up immediately as a volunteer and despite the short notice was able to rally many friends, family, and associates to the cause. It reminded me that I’m really surrounded by some incredible people!
So what was the experience like?
Overall it was really good and quite eye-opening. When we – my wife and I – showed up, we didn’t know anyone there, so we took the time to feel our way around. One of us may have hustled the poor event organizers for free swag. I won’t point fingers, but it wasn’t me.
Once we got checked in it was a couple of hours spent walking around the park where the event was held (Northpoint Park in Cambridge to be exact). It’s a great area that spreads out a good distance and if you walk far enough you’ll find yourself at North Station. The walk itself was sometime around 10:00 AM, which left us a few hours to check out all the tents set up in a circle in the park which were manned mostly by groups and companies sponsoring the walk.
Walking from tent to tent we learned a bit from each person we spoke to. Often they were sales reps of various companies in the dialysis field that were sponsors which led to mixed feelings. It was good to get any information I could, but it was a reminder that so much of the treatment focus is still centered on dialysis which while a blessing can be a tough way to live. It’s something that I would have liked to see evolve much further than it has over the last 50 years.
In addition to the company reps I also met some interesting volunteers who themselves were patients trying to make a positive out of their situation. Ideally I’d like to meet more of these people in future events, but I’ll get to that later. In short I’ve learned that the kidney health community has some really dedicated patient-volunteers who are making lives better for a lot of other patients.
When the time for the walk itself approached a number of people from all walks of life, patients, relatives of patients, and people working in the medical field gave brief speeches to talk about how far we’ve come and the challenges ahead. As I scanned the crowd I could definitely sense a palpable energy among the people and a broad range of emotions. You could look at the faces and see the fear, concern, uncertainty, resolve, and ultimately, hope.
A minor regret is not making more of an effort to interact with other patients. Meeting strangers is not a strength of mine and based on the way a number of groups seemed to be isolated from each other, I’m guessing I’m not the only one. Possible improvements could include coming up with better ways to facilitate interaction among the attendees, with perhaps a more concentrated social media effort.
In all, I think it’s a great annual event that can be built on in creative ways.
The Future Of Volunteering, Advocacy and Fundraising
With the 2019 Boston Kidney Walk in my rear view mirror I began to look at some of the organizations online to investigate just what sort of action was being done at a regional level. Given the number of people affected in some way by kidney disease, I was surprised to find that everything seems oddly, quiet in terms of patient activity. I was expecting there to be chapters upon chapters of meetup groups and awareness campaigns going on. I suppose this could just be the result of patients not all being in the condition medically or emotionally to commit themselves to such projects. Add that on top of home and work obligations and people do get squeezed for time and resources. There’s a lot I’m still learning about what makes a health community tick, so hopefully we can find ways to improve that situation.
That’s not to say there aren’t patients active in advancing the cause. On the contrary, there are some really selfless individuals working hard to raise awareness and ultimately funds to support research and quality of life issues.
In addition to following the National Kidney Foundation I’ve also begun to follow a couple very special organizations that are working to improve research for Nephrotic Syndrome related diseases.
IgA Nephropathy Foundation of America is an organization started in 2004 by Ed and Bonnie Schneider after their son was diagnosed at the age of 13. It was started, like many similar organizations, because as parents they were unable to find much of any information on the disease. Rather than sit back and be at the mercy of their condition, they banded together with other patients and relatives of patients with the goal of increasing research and making IgAN at least a little less obscure. They have done exactly that having raised funds that go directly towards work being done at University of Alabama at Birmingham and Columbia University.
Nephcure Kidney International is similar to IgAN FOA in that it is driven by patients and parents of patients but the scope is a little broader, focusing on all things related to Nephrotic Syndrome and the diseases that lead to it (IgAN, Minimal Change Syndrome, Focal Segmental Glomerulosclerosis, etc).
I recommend investigating both of these organizations and giving what you can to their causes. If there is going to be any advancement in Nephrotic Syndrome research it will come as a result of the efforts of these volunteers. You’ll see more regarding the upcoming projects of both of these groups in the coming months, but in the meantime check out the links above to learn more.
Disclaimer: I can be considered a lot of things, but a medical professional is not one of them. The Internet is not a medical facility. Always make sure you consult with your physician before making any medical decisions.