First let me start by thanking you for visiting my page. It is truly an honor to be a part of Team BIDMC running the 2018 Boston Marathon by raising funds for their Kidney Research Team. My story is a long one but I promise you it’s quite the story so I hope you’re ready!
Where do I even start in sharing why BIDMC’s Kidney Research Team? I guess I’ll start by sharing that I have a kidney disease called Alport Syndrome. Alport Syndrome is an inherited disease. In my case, it passed through generations on my mother’s side. Alport is a genetic condition characterized by kidney disease, hearing loss, and eye abnormalities. People with Alport Syndrome experience progressive loss of kidney function. Almost all affected individuals have blood in their urine, which indicates abnormal functioning of the kidneys. Many people with Alport Syndrome also develop high levels of protein in their urine. The kidneys become less able to function as this condition progresses, resulting in end-stage renal disease. There are three genetic types of Alport Syndrome. I have X-linked Alport (related to the X chromosome) which is the most common form of Alport Syndrome. Boys with this type are severely affected and almost always develop kidney failure at some point in their lives. Girls usually have milder symptoms than boys, but they too can develop kidney failure.
As a child I was always at the doctor for urine infections and every time my pediatrician would tell my mom there was blood in my urine. Back then though we didn’t know any better. While we knew a kidney disease ran in the family, no one knew what it was called. It wasn’t until I was pregnant with my son that my OB-GYN insisted I see a Nephrologist (Kidney Specialist) and it was that Nephrologist who called countless family members and their doctors to find out what exactly was this kidney disease that seems to run in generations upon generations of my family. I was about 3 months pregnant when I learned that it was called Alport Syndrome and that they couldn’t do a biopsy to confirm if I had it until after I gave birth. I spent the next 6-7 months constantly having blood drawn and doing bi-weekly 24hr urine tests so that they can monitor the amount of protein and creatine found in my urine which alerted them to my kidney function. My pregnancy put a big strain on my kidneys. I had a high-risk pregnancy and had to be put on bed rest at 8 months. But at full term, I gave birth to a beautiful healthy baby boy. I couldn’t stop thinking about the effect on a male if diagnosed with Alport. A blessing for me that my son is as healthy as can be. A year after his birth I had a biopsy done which confirmed I have X-linked Alport Syndrome. I am a carrier and my nephrologist believes that I will live a long “normal” life. I wish that could be the same for all those in my family who are also carriers.
Almost all the women on mom’s side of the family have Alport Syndrome. Most are carriers but one too many (including men) are on a waitlist for a kidney transplant. Many are on dialysis. My cousin almost died entering her third trimester of pregnancy as her kidney failed. I lost a very dear uncle to a mix of kidney failure while also battling skin cancer. Waiting for a donor is a life-long battle in itself. The sicker you are, the higher on the list of priority you go. Do you now how heartbreaking it is to know that you are extremely sick yet not sick enough to qualify for a donor transplant? Did you know that you can live a long life with just one kidney? My grandmother is living proof. She donated one of her kidneys to her son and she is 87 years old and still going on strong. My aunt just went through a successful transplant. My godmother also went through a successful transplant. I can go on and on and share all their stories.
This run is for my entire family. The SOTO family! I am running in honor of each and every one of them. We may live with this incurable disease but we will NOT let it direct our path. We will persevere!!
My goal is to raise over $10,000 towards Kidney Research. I ask that you please help me in reaching this goal. Any contribution will go a long way to continue medical advancement in the multitude of kidney diseases. No amount is too small. Know, it was important to me to support the BIDMC Kidney Research team because 100% of my fundraising goes towards their research.
One last note, beyond my personal motivation in running for this cause, if I could inspire just one person out there to believe they can accomplish anything, sharing these intimate details would be well worth it. Perhaps you are not affected by a kidney disorder but we are all afflicted by our own barriers and struggles. Just know childhood asthma, teenage anemia, even recent studies linking running to kidney damage may have stalled my efforts but with the constant help and encouragement from my doctors, I have not been defeated yet! Never Give Up!