“But You Look Fine…” – What Not To Say To A Kidney Disease Patient

As I meet and read about other kidney disease patients one of the chief complaints I hear is that the people around them have a hard time believing they’re dealing with a serious illness. It’s not that they don’t care, it’s just that they expect people with chronic diseases to look well, more sickly. Some patients battling kidney disease have a rather unique problem in that they look a little too good.

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Nephcure Northeast Has Arrived

If you are patient, parent, or person otherwise impacted by nephrotic syndrome living in the New England area please be aware that Nephcure Northeast is here to support you on your journey. The Nephcure organization is in the process of strengthening our outreach efforts by focusing within regionally based communities. Nephcure Northeast is the evolution of the old Nephcure New England group. In addition to the New England area, Nephcure Northeast also serves the New York, New Jersey, Pennsylvania, Maryland, Virginia, and Washington DC area.

If you are a member in one of these communities, we hope you will join us so we can make this journey together in support of each other and help make an impact in the future of treatment for the various diseases that got us here.

There’s no fancy forms to fill out, interrogations, or hazing rituals involved. Simply go to our Facebook group at the link below and click on the ‘Join’ link to request entrance. We will get you approved as soon as we see your request.

Once you have access feel free to post an introduction. You’ll find we’re a welcoming bunch!

The group can be reached at Nephcure Northeast Facebook Group.

Georgie Deputy Pleads For Living Donor

A criminal investigator in Georgia is one of over 100,000 in the nation in desperate need of a kidney donor. You can read the full story below from the 11Alive news page.

You see these stories fairly often and then there are those you never hear about. For that reason I try to link to these stories when I come across them in hopes that it will in some small way raise awareness that organ donation is a critical need and kidneys are a scarce resource for people who need them.

Please consider registering as a kidney donor if you haven’t already!

https://www.11alive.com/article/news/local/early-county-sheriffs-sgt-james-kimble-needs-kidney-donor/85-50969a74-8277-41d1-aea5-a447ca371124

Spark 2021 Announced!

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The IgA Nephropathy Foundation of America has announced the Spark 2021 IgAN Symposium which will once again be held virtually. This year it will be a one day event taking place on Saturday August 21, 2021 from 9:45 AM to 5:00 PM.

You can check out the official agenda page here.

Please note that as of this writing registration information hasn’t been made available, but once it is you will be able to find it at the above link. I will also post more details of this event as the year goes on.

Please consider attending if you or a loved one have been impacted by IgA Nephropathy. I can’t stress how important it is to become educated on this life altering disease.

If you have any questions feel free to reach out to me either via email or in the comments below.

Nephcure Patient Summit 2021

A Global Online Gathering

Nephcure Kidney International will be hosting their annual summit gathering on Sunday May 16, 2021 from 12:00 PM to 4:00 PM. The event is going to be held virtually this year.

This is a great opportunity for patients from across the globe to gather and learn about some of the latest advancements in research and treatments. This will also serve as a virtual ‘meetup’ for patients with nephrotic syndrome to share their experience with the diseases that brought them here.

Even better, this is a free event! If you are interested in attending you can sign up using the link below:

https://events.philanthropyrefined.com/e/NephcurePatientSummit

Nephcure’s 2021 Boston Countdown To A Cure

Just a quick note here that Nephcure has announced the annual Countdown To A Cure here in Boston. Like a lot of events last year, the 2020 event was a virtual event due to Covid-19. This year it is scheduled to take place in-person at the Boston Marriott Quincy, assuming the pandemic is in under control by then.

Date and location are as follows:

Boston Marriott Quincy
Saturday September 18, 2021

If you are interested in attending or sponsoring, you can find more information below:

https://give.nephcure.org/CountdownBoston/Donate/Tickets

National Kidney Foundation: Fireside Chat With Debbie Allen

For those with type 2 diabetes, you are at a much increased risk for chronic kidney disease. The National Kidney Foundation recently hosted a web chat with actress Debbie Allen where the focus was on raising awareness for those at risk, especially those who are either diagnosed with type 2 diabetes or prediabetic.

As one participant pointed out, most people aren’t aware of the dangers of kidney disease until they are diagnosed with it. This is something that needs to change if we are to save people from what is often a very preventable form of the disease in type 2 diabetes. Much of the advice here applies to those who aren’t diabetic, have another form of kidney disease, or are a perfect picture of health.

This is something you can (and should) get out ahead of!

Here is the link to the kidney quiz site they reference in the chat:

https://www.kidney.org/phi/form?version=awareness

Senate Passes Immunosuppressive Drug Coverage Legislation!

Just a brief (but significant!) update to the previous article regarding the drug coverage legislation making it’s way through Congress. Having already been passed by the House of Representatives recently, today the bill was passed by the Senate.

Call me bias, but this bill is an absolute no-brainer and I applaud both bodies of government for getting this right. I’m not sure if there are any other legislative hurdles for this law at this point, but I suspect it will need to be signed off by the president.

This is a good reminder to myself that as a kidney health advocate and general person who’s lived his whole life in this country, it might serve me well to brush up on the American legislative process. It couldn’t hurt.

The link to the National Kidney Foundation release is below:

https://www.kidney.org/news/national-kidney-foundation-applauds-landmark-immunosuppressive-drug-coverage-legislation-passed

House Passes Immunosuppressive Drug Coverage Legislation

It’s rare that I get to say this but, some good news came out of Washington today. The House Of Representatives passed the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act(H.R. 5534), which to summarize, will guarantee coverage for immunosupression drugs for the life of the transplanted organ. This will still need to pass through the Senate so while we haven’t crossed the finish line yet, this is a great first step.

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Lifetime Show Featuring IgAN On Wednesday 12/9/2020

Tune in on Wednesday 12/9/2020 at 7:30 AM Est on Lifetime channel for the Beyond The Mystery segment of The Balancing Act. Beyond The Mystery is segment they do on rare and genetic diseases and for this one they will include a focus on IgA Nephropathy.

I’ll admit I’m new to this program and hadn’t heard of it before it was posted to the IgAN Foundation’s Facebook group, but now I’m interested in seeing what they do going forward.

Be sure to check it out!

Edit: I originally posted that this would be on at 7:30 PM which was wrong. This will be 7:30 AM. It’s a morning show. I need to make sure I’m fully awake when posting these things. Sorry for any confusion.

https://thebalancingact.com/category/behind-the-mystery/

Update:

The episode has aired and the IgA Nephropathy Foundation Of America has the segment (just under 10 minutes) on their Youtube channel. I recommend checking out the video (linked below) and the rest of the videos they have on their channel.