26 Million…this is how many people just in the United States have Kidney Disease…26 Million!
I have to admit, before actually being diagnosed with Kidney Disease, which as you know was brought on by my Diabetes, I knew very little about the disease as a whole…or, and perhaps more importantly, how many variations of the disease there is. Some of those variations I have already touched on in earlier posts.
I want to tell you about another form of the disease, a form that has not received a whole lot of attention at all. In fact, I am willing to bet that there are a good number of people who have Kidney Disease in general, and those who read this blog specifically, that may not even know this form of kidney disease even exists. I also want to tell you about a special event being held in a couple of weeks with regard to this disease.
The form of Kidney Disease I am talking about is called Membranoproliferative glomerulonephritis (MPGN). According to emedicine.medscape.com: Membranoproliferative glomerulonephritis (MPGN) is an uncommon cause of chronic nephritis that occurs primarily in children and young adults. This entity refers to a pattern of glomerular injury based on characteristic histopathologic findings, including: (1) proliferation of mesangial and endothelial cells and expansion of the mesangial matrix, (2) thickening of the peripheral capillary walls by subendothelial immune deposits and/or intramembranous dense deposits, and (3) mesangial interposition into the capillary wall, giving rise to a double-contour or tram-track appearance on light microscopy. If you are aware of MPGN, you may also know that there are three separate types of MPGN, Type I, Type II and Type III.
You may have also seen MPGN Type II referred to as Dense Deposit Disease, or DDD. WebMD explains Dense Deposit Disease (DDD) as a rare kidney disease that stops the kidneys from correctly filtering waste from the blood. The name is descriptive of the electron-dense changes that transform the middle layer (lamina densa) of the glomerular basement membrane (GBM) in a segmental, discontinuous or diffuse pattern. The glomeruli are the filtering units of the kidney. Blood flows through very small capillaries in each glomerulus where it is filtered through the GBM to form urine. When DDD is present, deposits in the GBM lead to disruption of kidney function. Because damage to glomeruli is progressive, about half of all persons with DDD experience kidney failure after living with their disease for 10 years. The development of kidney failure means that dialysis or transplantation must be started.
I am singling out MPGN Type II for a very special and personal reason. You have seen me mention before that I have a great relationship with all of my cousins, to the point that they feel more like brothers and sisters rather than cousins. If I could have been the only one in our family (immediate and extended) to ever have been affected by Kidney Disease, that would have made me very happy because that would mean that no one else in the family would ever have to live a day worrying about kidney failure, dialysis, or even transplantation.
Unfortunately, that is not the case. My cousin Tommy, and his wife, Rose, have two beautiful children – Brenna, who just began her freshman year at college, and Tommy Jr. (The names Tommy, Jimmy and Michael are very common in our family…it is pretty funny sometimes to see someone (especially my mom or Aunt Mary) call out any or all of those names at a family gathering and have what seems like twenty people turn around and respond).
Tommy Jr. is 15 this year, and a sophomore in high school. But about four years ago in 2007, Tommy was diagnosed with MPGN Type II/DDD. Tommy loves school and got involved in SADD (Students Against Drunk Driving) and Junior AOH (Ancient Order of Hibernians) last year. His interest and talent in art continues to grow and he will continue with art classes at school. Baseball is still his favorite, playing as much as he can throughout the year. He played for the Freshman High School team this past year in addition to 3 other teams. It was a very busy spring and summer, his travel team winning the coveted Pennsylvania State Championship 14U Title. After a few weeks off, he is ready to start Fall Ball this weekend.
Looking at Tommy, much like many others who have Kidney Disease, you would never know that he and his family deal with this disease every single day. There is the constant regimen of medications and diet. There are no days off. But what you see in Tommy, is not so much of a person that is sick, but of young kid trying to enjoy every day with his family, friends, teammates and classmates. Much of Tommy’s life is like every other 15 year old but there are many things so different because of the disease. While he is one of the lucky ones so far, there are many battling much worse symptoms. His daily medication has many side effects…still most troubling to him is growth deceleration. He continues a sodium restricted diet and though he is used to it by now, the daily reminder of being different is always there.
|This is Tommy with the logo he made for his walk.|
One of the sad truths to this rare form of Kidney Disease is that approximately half of all children with DDD/MPGN II will go into kidney failure between 8-10 years after diagnosis. These children will require dialysis or transplantation in order to stay alive.
Two of the things I remember vividly as I was being rolled into the operating room for my transplant…one was of my brother, Tommy (see I told you there were a lot of Tommy’s in our family) going through surgery to help save my life; and the other was of Tommy Jr., just wishing that there would be a cure for his form of Kidney Disease, so he wouldn’t have to experience full kidney failure, dialysis or even the possibility of needing a transplant.
Which brings me to another sad truth of MPGN II/DDD, is that funding for research for DDD is extremely limited. So, Tommy, with the help of his family, aunts, uncles and grandparents, started to raise money for DDD. This year he will be participating in Tommy Kane’s 4th Annual Walk/Run Benefit for Kidneeds, which will be held on October 15th – just a couple of weeks away.
Tommy would like to raise as much as he possibly can for his disease, and this year he has set a goal of $8,000. Unfortunately, Tommy has a ways to go in order to reach his goal. So, I would like to ask all of you to consider helping Tommy reach his goal. I realize things are tight for everyone, but even if everyone contributed a just $5, $10, or even $20 (a week’s worth of coffee at Dunkin’ Donuts, or any other coffee shop), that would go a long way in helping Tommy reach his goal.
Tax deductible donations can be made online at: http://www.active.com/dona
If you are also within an hour or two drive of the Philadelphia/Bensalem area and would like to participate in this event registration begins at 9am for the 5K Run/Walk (3.1 mile), which will start at 9:30 am, followed by a 1 Mile Fun Run/Walk starting at 10:00 am. Tommy’s walk will be held at Neshaminy State Park, Pavilion #1. The park address is 3401 State Road, Bensalem, PA 19020, which is located at the intersection of State Road & Dunks Ferry Road. It is easily reached from the PA 132 (Street Road) Exit off I-95.
Please do me a favor…please pass along the link to this blog or the Facebook page to everyone in your address books/contact lists. I would like to call attention to Kidney Disease in general, and MPGN II/DDD specifically. I would love to see Tommy reach his goal, that would be a tremendous accomplishment, and he would be doing his part to reduce that number of 26 million affected by Kidney Disease! On behalf of Tommy and his family, I want to thank you for helping him raise these funds and reach his goal. If you would like additional information about DDD, please visit: http://www.medicine.uiowa.edu/kidneeds/index.htm
If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.