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Medullary Sponge Kidney (MSK) Patients Unite - One Voice, Several Goals

1,851 Signatures Goal: 2,000

Medullary Sponge Kidney Disease (MSK) is categorized as a rare congenital birth defect of the kidneys, a "benign" disorder that prevents the kidneys from filtering waste from the body properly. This results in hundreds of kidney stones and calcifications in each kidney, as well as frequent urinary tract infections (UTIs), kidney infections, bladder infections, and blood in the urine (hematuria). The current available research on MSK suggests that cases are sporadic, and that it affects about 1 person per 5,000 - 20,000 in the United States.

There has been no new research done on MSK until recently, an article written by Dr. Amit K. Ghosh, MD, DM, FACP was updated on January 5, 2012:

http://emedicine.medscape.com/article/242886-overv... (scroll down for complete link)

This article was updated to include a brief paragraph about chronic pain in MSK patients : "Some physicians may encounter patients with medullary sponge kidney who claim severe, chronic renal pain without any manifestation of infection, stones, or obstruction. The source of this pain is unclear. These patients may be treated best by physicians comfortable with chronic pain management".

There are people all over the US and in other countries that have been diagnosed with MSK and are suffering with chronic pain and looking for answers. There is a support group for MSK patients on Facebook, which currently has 270 members (and that number is growing every day). In this group, MANY of the members suffer with chronic pain, and MANY of the members face extreme difficulties getting their doctors to understand. You can find our group here: https://www.facebook.com/#!/groups/Spongelife/

Currently, the status quo in treating this disease is the same across the board - treat UTIs, kidney, and bladder infections as they occur, and remove kidney stones as they block. Many MSK patients have had repeated surgeries to get rid of stones, but the surgeries were unsuccessful; Lithotripsy in particular. Many MSK patients pass stones every day, while others produce huge stones that are unable to pass. The majority of us are treated like drug addicts because the current medical information states that there is no pain involved with MSK. Most doctors have never even heard of MSK and the few that have, told their patients they only spent a few brief moments learning about it in medical school.

Current research suggests that kidney failure rates among MSK patients are rare, yet I and many others have declining kidney function that continues to get progressively worse as we age. It is extremely plausible that if steps are not taken now to make advances in treatment options, that kidney failure rates in patients with MSK could eventually skyrocket. We cannot let it get to that point.

As a MSK patient, I am challenging the current diagnosis and prognosis, and taking it a step further to say that this disease is NOT the "benign" disease it is portrayed to be in the current available research. MSK patients suffer with severe, chronic pain every day. I also believe that MSK is not as rare as the outdated research suggests. It is time to change the status quo in treating this debilitating disease, and to initiate new research and treatment options.

I take this common sense approach as to why MSK is so painful: The kidneys are vital organs just like the heart, lungs, etc. They are the filtering system for the entire body and without them, you die. EVERY vital organ requires a constant blood supply and EVERY vital organ has nerves in it. Even your teeth have nerves, and they are not vital organs. Why would the kidneys be different than any other vital organ? THEY AREN'T!

So, if you have MSK, your kidneys did not form correctly when you were still in the womb. The tiny little tubes inside them cannot filter properly, so calcifications and jagged crystals that are hard as rocks form. As the waste backs up, the crystals bind with oxalates (in most cases), and turn into stones, literally. So essentially, there are thousands of these tiny, jagged crystals and hundreds (yes hundreds) of rocks in each kidney. With every movement and every breath you take, all of these crystals and stones are rubbing, grinding, and shredding the insides of your kidneys. How on earth could this NOT be painful? The answer is simple - it is EXTREMELY PAINFUL!

Have you ever gotten a grain of sand in your eye? It stops you in your tracks, and you can't focus on anything else because of the pain it causes. You know that feeling of scratching, burning, and throbbing it causes? Magnify that feeling several thousand times and move it into your upper back, lower back, ribs, torso, and pelvic areas all at once. Welcome to the world of a MSKer! The eyes are not vital organs either - you can live without your eyes, but it sure does hurt when something gets in them!

I recently contacted the "American Chronic Pain Association", and they have agreed to list MSK as a "chronic pain" disease on their website. This is a HUGE start, but it isn't enough. I have also contacted The National Kidney Foundation, The American Urology Association, Mayo Clinic, Cleveland Clinic, The Kidney Research Institute, UKRO (University Research Organization), NIDDK (National Kidney and Urologic Diseases Information Clearinghouse), The Kidney Research Institute UK, and Johns Hopkins, as well as the television shows "The Doctors" and the "Today Show".

I was also recently featured in an article written by Mr. Radley Balko of the "Huffington Post", where I talk about the chronic pain I live with and the limitations that MSK places on me, along with not being able to get proper treatment and pain control: http://www.huffingtonpost.com/radley-balko/us-pain....(scroll down for complete link)

I am working diligently to change the views of the medical community when it comes to MSK. I am trying to start a public awareness campaign, and to get new funding and research implemented. I need your help! Please, if you or someone you know suffers with Medullary Sponge Kidney Disease (MSK), please sign this petition to help me with this goal. Every single MSK patient deserves to be treated with dignity and respect, and to have treatment options made available that will help them to deal with the symptoms of this debilitating disease. There is no cure, and we all will have to deal with these issues for the rest of our lives. That doesn't mean we should have to suffer. Help us to persuade the medical community to take us seriously.

** Just as a quick update, our group has grown from 270 members when I started this petition to 1,708 members. We always have requests to join and add new members on a non-stop basis; this PROVES that MSK is not as rare as the outdated research suggests, and supports my claims in this petition. If you read through the comments that have been posted, you will see that many people are dealing with exactly what I described when I created this. IT IS TIME THAT WE ARE HEARD AND TAKEN SERIOUSLY! IT IS TIME FOR US TO STOP SUFFERING! Your support is greatly appreciated.

Thank you,

Mary Maston
MSK Advocate

Links

 http://emedicine.medscape.com/article/242886-overview

 

https://www.facebook.com/#!/groups/Spongelife/


http://www.huffingtonpost.com/radley-balko/us-painkillers-abuse_b_1263565.html

 

 http://www.squidoo.com/medullary-sponge-kidney


 

 

 

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Highlight

May 16
It has been four years since I started this petition, and it had gotten support from all over the world. Thank you all for that! I am both happy and sad to report that our tiny little Facebook group has grown from 270 members when I created the petition to 1,708 members - and we continue to add people every day that are looking for answers and support. I know you are out there, and I know you are in pain. We are working on getting some changes made so that hopefully the medical community will take us seriously, and strive to come up with better options than what we have now. I still have not lost hope!
  • Summer Waters
    Summer Waters United States, White House
    Apr 29, 2016
    Apr 29, 2016
    I was diagnosed with MSK 15 years ago. I've had numerous surgeries and now I'm on heavy pain medication for chronic pain caused by this rare disease.
  • stuart martin
    stuart martin United Kingdom, Cambridge
    Apr 28, 2016
    Apr 28, 2016
    Have suffered with MSK since was 18, now 50 , have suffered pain daily
  • Amanda Gogan
    Amanda Gogan United States, Sweet Home
    Apr 27, 2016
    Apr 27, 2016
    I have had MSK now for 7 years!! So wish they had more info on our disease
  • Susan Nichols
    Susan Nichols United States, Cypress
    Apr 26, 2016
    Apr 26, 2016
    Living with MSK
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