Understanding Iga nephropathy
- As Stephen Bredfeldt is recovering from his recent kidney transplant, he has opened up about his battle with a kidney disease called IgA nephropathy and his how his “hero” wife saved his life her her own kidney.
- According to the NIH’s National Institute of Diabetes and Digestive and Kidney Diseases, Iga nephropathy, also known as Berger’s disease, is an “an autoimmune disease that occurs when clumps of antibodies are deposited in your kidneys, causing inflammation and kidney damage.”
- Handling a rare disease can be very overwhelming, but SurvivorNet’s experts have guidance on how to seek out specialized treatment providers.
- More common diseases might not require the same degree of specialized attention, but finding doctors with specific expertise may be necessary for rare ones. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
- The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for your rare disease. These databases can also help you find doctors who specialize in your disease.
- Other options you may pursue include researching companies that are in the process of developing drugs to treat your specific disease and investigating the possibility of “compassionate use,” which makes drugs available to some patients before the drugs are officially approved.
The Nashville residents, who have since more than $7,000 raised for them in support of the Stephen’s kidney transplant, spoke with WSMV in a recent interview about what led to the life-altering procedure and how grateful they are.
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“It seemed impossible that we would be a match. Like that’s, that’s really difficult. There’s a lot of things that have to match up,” Amy told the news outlet, which noted the likelihood of two unrelated people being a perfect match to be 1-in-100,000.
They ultimately underwent transplant surgery at Ascension Saint Thomas Hospital this past April and have been recovering since, with Stephen’s health continuing to be monitored, including him taking about 35 pills a day to prevent new kidney rejection.
As for being able to have the surgery done, Stephen recalled, “Just to find out that it actually is going to happen was just like one of the best days of my life.”
He also praised his wife as his “hero,” further explaining, “Like, she literally saved my life, and it’s something that I’ll never forget to always be grateful for.”
Meanwhile, the GoFundMe set up for Stephen by his sister Amy Shank, further detailed her brother’s journey to getting a kidney transplant, writing, “Since his diagnosis, Stephen has faced countless challenges, yet his resilience and determination have remained unwavering. He has been working hard to slow the progression of his kidney disease by changing many aspects of his diet, sacrificing his beloved daily runs, and attending countless doctors’ appointments, tests, and managing his symptoms with medication.
“He was able to hold off on needing dialysis while he waited to be put on the kidney donation list. This year, his kidney disease progressed requiring him to join the waiting list for a new kidney that would save his life. Over the past several months, family members were tested to join a kidney donation program.”
She continued, “His wife, Amy, took dozens of tests in March to see if she could donate one of her own kidneys to a stranger to move Stephen up on the donation list.
“However, God had a different plan. On April 8th, we found out that Amy was a perfect match for Stephen. The odds of a spouse being a match is about one in 100,000! Stephen and Amy are scheduled to have their surgeries on April 30th, 2024.
Shank pointed out how all donations made would help assist them with medical expenses.
“Throughout all these challenges, Stephen has found hope that this is only the start for what the future holds. After his surgery and recovery he is motivated to share his story in order to help encourage others going through similar circumstances. Receiving this kidney transplant is only the beginning for Stephen, and we know that with his determination and strength he will continue to grow from these experiences and will be a source of hope for others,” Shank concluded.
“Thank you for your kindness, compassion, and unwavering support. Your generosity will forever be etched in our hearts as we stand by Stephen in his courageous battle against igA nephropathy.”
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A May 3rd update on the GoFundMe page added, “Stephen and Amy’s surgeries both went great! Amy was discharged the following day and Stephen went home today 5/3.
“They are now recovering at home with friends and family around to help support them. Stephen, Amy and the entire family are so grateful for the prayers, sharing their stories and your generous donations. Thank you so much!”
Understanding IgA Nephropathy
According to the NIH, IgA nephropathy “is an autoimmune disease that occurs when clumps of antibodies are deposited in your kidneys, causing inflammation and kidney damage.”
The institute explains further, “Clumps of immunoglobulin A (IgA) and other antibodies damage the glomeruli, tiny blood vessels in your kidneys that filter blood, causing your kidneys to leak blood and protein into your urine. The damage may also lead to the scarring of the nephrons, the filtering units where the glomeruli are located.”
The NIH also says the disease is a an important cause of chronic kidney disease and kidney failure.
Those who are more likely to have this disease are people with
- a family history of the disease or of IgA vasculitis
- health conditions like as celiac disease, hepatitis, cirrhosis, and HIV infection
- between the ages 10 to 40
- who are of East Asian or white European ancestry
- who are male
Complications of this disease can include
Complications of IgA nephropathy can include high blood pressure [hypertension], chronic kidney disease, nephrotic syndrome, or kidney failure.
Symptoms vary and may be hard to notice, but common signs include:
- pink or cola-colored urine due to blood in your urine
- foamy urine from protein leaking into your urine
- swelling due to excess fluid in various parts of your body
As for how to treat IgA nephropathy, doctors may prescribed medicines to reduce blood pressure, lower cholesterol, or suggest lifestyle changes, like reducing sodium intake and quitting smoking.
The NIH adds, “In some cases, your health care professional may also prescribe immunosuppressants, including corticosteroids NIH external link. But these medicines can cause serious side effects, such as weight gain or a weakened immune system.
“Although researchers have not yet found a cure for IgA nephropathy, treatment can help prevent or delay damage to your kidneys. New treatments are under development, and several are being evaluated in clinical trials.In many cases, IgA nephropathy does not get worse over time. But if the disease progresses to kidney failure, you may need a kidney transplant or blood-filtering treatments called dialysis.”
Resilience Through Adversity
SurvivorNet specializes in covering the lives of people who overcome seemingly insurmountable obstacles, like Stephen Bredfeldt is doing as he recovers from a kidney transplant. Often, seeing the positive helps them maintain their resilience.
Dr. Zuri Murrell, an oncologist at Cedars-Sinai Medical Center, spoke to SurvivorNet about the role of a positive outlook on survival rates: “I’m pretty good at telling what kind of patient are going to still have this attitude and probably going to live the longest, even with bad, bad disease. And those are patients who, they have gratitude in life.”
Resilience: Staying Positive Despite Adversity
Meanwhile, resilience is an important trait, but not the easiest to build. When building resilience, the ultimate goal is not to avoid tough times, but to be able to bounce back from them. And yet, when they are faced with an overwhelming, life-changing situation, how do people shift their view? How do they learn to see the problem as temporary, rather than permanent, and figure out a solution?
It’s complicated, because building resilience is more about your mental and emotional fortitude than anything else. According to the American Psychological Association, “the resources and skills associated with more positive adaptation (i.e., greater resilience) can be cultivated and practiced.” In other words, resilience is not something you’re born with, which should be encouraging. Instead, after every challenge in your life, you build more and more resilience to those hard times.
Building resilience is down in the same way you build muscle through patience and steady exercise of the skill. Some lessons learned from other cancer warriors SurvivorNet has covered include being willing to learn, spending time with people who inspire you, allowing yourself to grieve, being flexible, and leaning in to your community for support.
Have a Rare Disease? Here are Some Resources
All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services, and also wonderful pathology and radiology.”
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Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board, a group to go through all the details of your case so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment )or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.
Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinical Trials Can be Life-Saving for Some
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you’d prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
PubMed
Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.
If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.
Newly-Developed Drugs
For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.
The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.
Building Support, Staying Connected
If you were recently diagnosed with a life-altering disease like Stephen Bredfeldt, you likely know about the wide range of emotions that news can bring.
This is one of the most difficult phases of a health journey to overcome. However, it’s during these early stages that a team of supporters can be most useful. Your supporters can be made up of close family members and friends. Your support group can also be filled with people from outside your inner circle.
“Some people don’t need to go outside of their family and friends circle. They feel like they have enough support there,” New York-based psychiatrist Dr. Lori Plutchik tells SurvivorNet. “But for people who feel like they need a little bit more, it is important to reach out to a mental health professional.” she added.
One of the benefits of having supporters includes helping alleviate stress and anxiety following your diagnosis. Supporters can also help advocate for you during treatment.
Sometimes it is not always easy to share news you have cancer even among loved ones. In instances like these, you can seek out a trained professional to center your support group around. Mental health professionals can help fill this space because many are trained to help you navigate your cancer treatment.
“Make sure that the mental health professional that you work it is reaching out, with your consent, to the rest of your team, to the oncologist, to the surgeon, it can also be helpful to reach out to family, friends, and any other caretakers that may be involved in the person’s treatment,” Dr. Plutchik said.
WATCH: Seeking support after a diagnosis.
Dr. Plutchki recommends cancer patients consider the following three steps to get the help you need after a diagnosis:
- Step #1: Seek additional support if you need it (this could mean speaking to a mental health professional or seeking out a support group)
- Step #2: Look for a mental health professional who has experience helping people in your situation.
- Step #3: Keep your care team connected this may include your friends and loved ones, your therapist, and the doctors who are treating your cancer.
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Contributing: SurvivorNet Staff
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