Faces of IGAN

To be featured as a “Face of IGAN”, please email mary@igan.org with your picture and what you would like to share about your IGAN/HSP journey.

Thank you to everyone who has shared their story so far:

Brian Vidosh
DIAGNOSIS: IGAN
Brian Vidosh is the son of Edwina Vidosh, our IGAN Texas founder. After her son's diagnosis, Edwina became very involved with The IGA Nephropathy Foundation of America. Read more about IGANTX by clicking on the box link on the home page titled IGAN Texas.
Susan Copeland–Fritz
DIAGNOSIS: IGAN
Susan is from Fremont, California. She was diagnosed in 2006. Susan struggled with illness her entire life and was relieved when she was finally properly diagnosed. She currently has 40% kidney function and hopes every day for a cure.
Eduardo Perez
DIAGNOSIS: IGAN
"I was diagnosed in 2012 after a routine check up noticing microscopic hematuria. Currently my kidney function is stable, controlled with immunosuppresants, omega3, vitamin D supplements and ACE inhibitors."
Aiden Hess
DIAGNOSIS: IGAN
From Pennsylvania, Aiden has been battling IGAN since 2009. He is on multiple medications and is hospitalized often. His mother and father, Melissa and Chris, alongside Aiden pray for a cure everyday.
Elizabeth McGregor
DIAGNOSIS: IGAN
Elizabeth is from New Jersey and was diagnosed in 1997. When Elizabeth was first diagnosed, she was extremely scared of the unknown. Today, she receives regular check ups, takes Lortel daily, and has had excellent blood work due to the medication and her regular exercising.
Magda Bonacina
DIAGNOSIS: IGAN
Magda is from Genova, Italy and was diagnosed in 1983. Magda feels lucky to still live a normal life. She is happy that her illness never got in the way of her teaching career, her travels, and her ability to be a mother. The real impact of the disease for Magda comes from the fear of not knowing and the desperation for a cure (she also misses her high protein and salt diet!)
Erielle Emmons
DIAGNOSIS: IGAN
Arielle is from Little Rock, Arkansas and is 28 years old. She is currently on dialysis and it has completely changed her life. Arielle has good days and bad days. Her good days she feels like a normal person but on her bad days she feels completely reliant on those around her. She stays positive about the future and is looking forward to moving forward in a better, healthier life.
Brandy Evetts
DIAGNOSIS: IGAN
"I was diagnosed with kidney disease in 2006. It wasn't until I had my son in 2012 that my labs worsened and I needed to start an ACE inhibitor. A biopsy confirmed IgAN in 2015. I received steroid treatment for 10 months and went into remission. I have been in remission for a little over 1 year. Living with this disease has been challenging, but I remain hopeful and pray that a cure will be found."
Noah Schwartz
DIAGNOSIS: IGAN
Noah is from Toronto, Canada and is 30 years old. Noah was diagnosed in 1999. At this stage, IGAN has affected his life primarily by his modified diet, restless sleep due to hydrochlorothiazide), and the fear of what the future may hold for him living with an incurable disease.
Mike Atkinson
DIAGNOSIS: IGAN
Mike was diagnosed in January 2014 and his kidneys failed 14 months later. After 10 months on peritoneal dialysis, his family’s dear friend, Emory, donated her kidney on his behalf so he could get the kidney he needed. Living longer means he can enjoy Stacy, his wife of 36 years, his 8 kids and 8 grandkids. He is honored to support the IGAN Foundation’s great work.
Chris Scroggins
DIAGNOSIS: IGAN
Chris was diagnosed shortly after he began attending the US Merchant Marine Academy in 2014. Though he is no longer attending the USMMA due to his diagnosis, his strength of character grew during his short time there and continues to grow today, allowing him to face IGA with courage and determination.
Jean McNiff
DIAGNOSIS: IGAN
Jean was originally diagnosed with Lupus in 1993 then re-diagnosed with IGA Nephropathy in 2002. In 1993 she received treatment for the diagnosis of Lupus for years. Today, after her proper diagnosis, Jean is medication free and almost symptom free besides blood in the urine. Jean struggles with IGANs ability to mimic so many other diseases and the lack of known information about the disease.
John Marsala
DIAGNOSIS: IGAN
Diagnosed in January 2006, John and his wife were relatively uninformed about the disease. In 2013, when his condition worsened, he was referred to Dr. Appel. It was not until after visiting Dr. Appel that he and his wife fully started to understand IGAN. Dr. Appel's office was also where they met Donald Jones. Since then, John has joined The IGA Nephropathy Foundation Board and has been very active as the NY Area Rep ever since.
Debra Dawidziak
DIAGNOSIS: IGAN
Debra Dawidziak is from Madison, Wisconsin. She was diagnosed in 2013 after a few years of trying to figure out what was going on with her health. Debra's biggest struggle with IGAN has been fatigue, as she has also struggled with chronic anemia due to the disease. Debra's IGAN is currently in stage 4. She manages by very closely monitoring her diet and staying hydrated to try to avoid dialysis while she waits for a kidney. Debra is hopeful that one day a cure for IGAN will be discovered.
Jackie Wold
DIAGNOSIS: IGAN
"I am a recent graduate from the University of Michigan. I found out I had at IgA Nephropathy at the end of my senior year in high school. For 6 months starting in the summer before college until December, I had to take an intense amount of prednisone, a steroid that had substantial side effects. It was hard to adapt to college while having this condition. However, having a great health support system here in Ann Arbor made the transition much easier. Because I am so inspired by those around me and wanting to find out answers to this disease, I will be working with an IGAN research team starting in September (2017) under Dr. Kiryluk at Columbia Medical School."
Jennifer Phillips
DIAGNOSIS: IGAN
"My name is Jennifer Phillips and I am a 35 year old married mother of 2 biological children, but I have "bonus" children as well! I live in Tulsa, Oklahoma. My journey with IgA began when I started noticing several bouts of gross hematuria after being ill. After many false diagnoses, I was finally referred for a biopsy at the age of 28 and diagnosed shortly thereafter. I had minor problems during my pregnancies (pre diagnosis) that, looking back, were likely related. So far I haven't lost any kidney function, but I did have to begin taking blood pressure medication 5 years ago. I try to eat heathy, exercise as much as possible, and not fret about the what ifs. I'm so happy to have this foundation and look forward to learning more and meeting others like me."
Cindy Osborne
DIAGNOSIS: IGAN
"In September of 2006 during a CT scan that was being done for some irritable bowel issues I was having, cancer was discovered on my right kidney. I was referred to an urologist and in November of that year had my right kidney removed. My urologist then referred me to the care of a nephrologist to monitor my one kidney. Things were fine for several years (and thankfully no reoccurrence of cancer) but then my protein numbers started rising. After a kidney biopsy in May of 2014, I was diagnosed with IgAN. My neph says that I’m a statistical oddity since I have had two unusual kidney events happen - kidney cancer and then developing IgAN. As this disease can do, things began to change quickly and unexpectedly. I’m now Stage 4 and am going through the process of getting on the transplant list and looking for a living donor. Its overwhelming and scary but I am blessed with family and a loving network of friends who are so supportive and caring. Most of the time now I don’t feel very good, have no appetite and just tire out so easily. I’m trying to adjust to this “new normal” in my life and for the most part am doing a pretty good job of it. I’m a wife, mother, grandmother and sister-caregiver to my mentally disabled brother who has lived with us for the past 18 years. I work alongside my veterinarian husband at our animal hospital as the business manager but sadly am backing out of that as its just too much for me now. I’m active in teaching Bible classes for ladies and also children. Again, in my adjustment to this obtrusive disease, I’ve had to give up my 4th grade Bible class and that was hard. But I’m blessed and I face the unknown future with a peace of heart and with such love and support from so many that I can’t do anything else but SMILE at my situation!"
William "Bill" Murray
DIAGNOSIS: IGAN
Bill was a self-employed plumber for his company, Shamrock Plumbing, until Chronic Kidney Disease (CKD) and End Stage Renal Disease (ESRD) forced him to shutter it and take disability. He was biopsy diagnosed with IgA Nephropathy in 1996. At which point his nephrologist told him that he would require dialysis to live. He followed doctors’ orders including changing lifestyle and diet restrictions along with a mind boggling amount of medicine that was constantly modified for the next 17 years until his kidney function dropped into the danger zone and he went into end stage renal failure. But he spent those years, researching his disease and all of his treatment options. He discovered that home dialysis was the most effective and had the best results. He started on peritoneal dialysis (PD) for the first 10 months. But, because of weight gain and having to constantly use the highest strength solution due to his diabetes, he made the switch to home hemodialysis (HHD). He has continued this mode of treatment very successfully since. He is constantly promoting the advantages of doing home hemodialysis from the freedom of strict in-center schedule, the flexibility of days performed and less or no physical draining, to the fact that it is most closely related to natural kidney function. The difficulties of living with CKD and ESRD range from coping with getting listed at transplant centers and searching for a living donor, to waiting for the call that a kidney has become available. His personal experiences has ignited his passion for early detection, education, organ availability and donor support. He has become an active fundraiser in all related Walks in the area. He has become an active advocate both locally and nationally for National Kidney Foundation (NKF), Nephcure Kidney International (NKI) and Gift of Life Donor Foundation. He is peer mentor for both NKF and NKI. Bill is also a patient representative (PR), patient action committee (PAC) member and a subject matter expert (SME) for the ESRD Network 4 along with a SME for National KCER Patient and Family Engagement Learning and Action Network (N-KPFE-LAN) representing Network 4. He has also been recruited by NxStage to become one of their national advocates for home hemodialysis treatment options. Bill was recognized by Gift of Life in 2015 as their outstanding first year volunteer and is being recognized by NKFDV on World Kidney Day as their outstanding advocate for his work. Bill currently resides in Delaware and we wish him well and look forward to working with him in the future.
Matthew Rogers
DIAGNOSIS: IGAN
Bonnie Schneider
DIAGNOSIS: IGAN
During the month of July, we are sharing the stories of our IgA Nephropathy patients. We start things off with Bonnie Schneider and her family's story. Bonnie is the Founder and Director of the IGA Nephropathy Foundation of America, a nonprofit NephCure that has future plans to merge with. We want to hear from you!! If you or a loved one have IgAN we'd love to share your story during this month as well. Please fill out the form here: http://form.jotform.us/form/50425070684149 "15 years ago our son, Eddie, seemed to be recovering from a bad cold. When he came to me and said that his urine looked like coca-cola when he was in school, I was shocked. After giving him several glasses of water, I discovered that it was very dark. I can immediately remember the fear I felt at that moment like it was yesterday. After admitting him to the hospital we received the diagnosis of IGA Nephropathy. I immediately sought out to find answers to my questions: What is IGAN? Is there a cure? To my great dismay not only was there no cure but little treatment other than ace inhibitors and steroids. The next year and a half Eddie missed 36 days of school and was in and out of the hospital with efforts to keep his blood pressure under control. During this time I looked for other families to network with so I did not feel so isolated. I could not find anyone near me that even heard of IGAN. Being a proactive person by nature, I realized that there must be many other families out there somewhere that felt like me. It became clear that I needed to start a foundation and that was the beginning of the IGA Nephropathy Foundation of America. Fifteen years later Eddie's disease remains dormant, but there is not a day that goes by that I don't worry about the disease rearing its ugly head. We just have to keep moving forward and continue to fill these clinical trials on KidneyHealthGateway.com so all of our protein spilling diseases can become a thing of the past. Although all of our diseases are different they are also so similar. I am grateful that we are included and part of the Nephcure family," -Bonnie Schneider
Gisela Delgado
DIAGNOSIS: IGAN
We are dubbing July IgA Nephropathy Awareness Month at NephCure. IgAN is a rare kidney disease, similar to Nephrotic Syndrome, but very different too. Today we share Gisela Delgado's story. A New Jersey native, Gisela was diagnosed with IgAN at the age of 14. She also a social media wizard and works with IGA Nephropathy Foundation of America. "Picture it: December 1993, the first sign was Coca-Cola. That's what it looked like. I went to use the bathroom and before I flushed the toilet, I took one look at the brown urine and knew something was wrong. "MAAAAAA,” I yelled for her to come and investigate. When you are thirteen and things go wrong, your parents make it better. Unfortunately, six months later I was diagnosed with IgA Nephropathy via a kidney biopsy. At the time they said there was little they could do for me. I did not qualify for any clinical trials as my disease was not showing symptoms that could be treated. So, I just went about life - with this diagnosis- waiting to get sicker. Fast forward to February 2011, I end up in the emergency room with what I thought was a stomach virus. My blood pressure was through the roof and I was told to follow up with nephrologist as soon as possible, due to blood and protein in my urine. My new nephrologist wanted to reconfirm my diagnosis, so I had my 2nd kidney biopsy at 30 years old. The biopsy confirmed I had IgAN and then the quest to find the right cocktail of drugs started. Waiting to get sicker to qualify for transplant but also doing everything I could to stay healthy with diet and exercise. September 2017, my GFR drops to 20% and I am listed for transplant. I begin my search for a living donor. It is not easy BUT it is possible! A few months ago, in February 2019, I receive a pre-emptive living kidney donor transplant (avoiding dialysis). My GFR was 8 and Creatinine 5.99 at the time. My goal today is to keep this 3rd kidney for as long as possible and help educate others on IgAN as well as how to find a living donor through self-advocacy." -Gisela Delgado
Madeline Johnson
DIAGNOSIS: IGAN
July is IgA Nephropathy Awareness Month at NephCure. We are continually sharing patient stories, introducing you to Madeline Johnson from Wisconsin. Find out more about her journey to successful transplantation below: "It all started when I was 22 years old, that's when I began noticing a difference in my urine. It looked as if I was dehydrated, even though I was not. I made an appointment with my doctor who then referred me to a specialist, thinking I had kidney stones. It was then determined my kidneys were only functioning at 30%. A kidney biopsy was done to determine the kidney disease and the results were IgA Nephropathy. I was immediately started on a blood pressure medication in hopes of slowing down the progression of the disease, but the doctors said the biopsy showed the damage to both kidneys was bad. I was stable for a year when my creatinine began to increase rapidly and my kidney function declined. By December 2018, at the age of 24, I started dialysis. I was on dialysis for 2 months when I found out my brother was approved to donate me a kidney! On February 27, 2019, I got the gift of life and I am forever grateful! I am now 4 months post-op and doing great! Working full time and pursuing my master's degree." -Madeline Johnson
Stuart Miller
DIAGNOSIS: IGAN
It may be nearing the end of July, but we are still in full celebrations of IgA Nephropathy Awareness Month at NephCure. This time we would like you to meet Stuart Miller, a 60-year-old patient from Georgia. Stuart was diagnosed with IgAN at the age of 52. Here is his story: "For over 25 years I had protein in my urine. Many doctors told me that some people just have a small amount of protein and I should not be concerned. About 10 years I moved to a new city and my doctor recommended that I see a nephrologist. I did and they told me that I definitely had kidney disease, but could not determine the source without a biopsy. After about a year of my GFR declining, I decided to have the biopsy. The diagnosis was IGAN. I was told by my doctor that there was really no treatment, but I should watch my diet and continue to monitor my GFR. After 4 more years of declining GFR, my nephrologist advised me to take fish oil while also prescribing prednisone. The prednisone seemed to delay the effects of the IGAN, but not for long. In 2016, my GFR dropped below 21 and I was considered to become a candidate for a transplant. After almost a year of testing and waiting, I was approved to receive a kidney-- all l I had to do was find a living donor! I am not shy by nature, but it is a very humbling experience trying to find someone who is willing to donate a kidney so that you can continue with your life. My wife agreed to donate her kidney, but she was not a match for me. Working with paired kidney exchange, 9 months later I received my kidney. My 'kidneyversary' is July 19th... my new kidney just celebrated it's first birthday 3 days ago! The transplant was not without complications, I had one rejection. We seem to be back on track and getting back normal whatever that is. I am very lucky and happy to share my story to let others know that there is hope for them as well." -Stuart Miller
Elaine E
DIAGNOSIS: IGAN
July= IgA Nephropathy Awareness month here at Nephcure. We've been sharing your IgAN stories all month, today we introduce you to Elaina E. from Kentucky. She explains her diagnosis as well as her disappointment with the lack of suitable treatment options: “Where do I begin, a registered nurse that I know approached me wondering if I would be interested in donating a kidney and becoming a living donor. I was happy to donate and preliminary tests showed I was a match for her friend. However, with further testing, my results showed microscopic blood and protein in the urine. After many visits and a kidney biopsy to get to the root of the problem, I was diagnosed. I found out that I am at around 48% function and living my life with as much jest as I can. I will refuse dialysis when the time comes. I can not afford treatments, which has made me accept my disease and live with it. This is my story and my life, I just hope there is a cure down the line for those that live with this disease.” - Elaine E If you want to share your story, please click on the link below: http://form.jotform.us/form/5042507068419
Lillie Enicke
DIAGNOSIS: IGAN
We are nearing the end of July, but we're still going strong celebrating IgA Nephropathy Awareness Month. Today, we want you to meet 15-year-old Lillie Enicke and her mother, Carrie. Lillie was diagnosed with IgA Nephropathy when she was 8 and then developed Nephrotic Syndrome at age 13. Her story is told by her mom: "In September 2017, when Lillie developed Nephrotic Syndrome, she was put on prednisone. Prednisone is a wonderful drug for healing, not so much for side effects. My sweet Lillie gained over 40lbs in 4 months. The prednisone wasn’t helping, but the doctors continued to have her take it. Over time, her joints started to deteriorate. Lillie is now in physical therapy because of her painful joints and her hips are now out of alignment. She also developed fluid behind her heart which resulted in another of many hospitals stays for EKGs, ultrasounds and more tests. Because prednisone wasn’t working, the doctors added Cellcept. Still, the results weren’t what was desired so Lillie had to do Rituximab infusions. These infusions caused Lillie’s immune system to be severely compromised. In September 2018, Lillie was exposed to chickenpox. Because of her compromised immune system, Lillie had to have four antiviral shots to boost her chickenpox immunity. In addition to all of the physical effects listed above, there are many mental/emotional effects as well. Lillie now has high anxiety and panic attacks. All of the medications she takes, the weight she’s been unable to lose, the painful joints have all caused her self-esteem to drop. In saying all of this, Lillie is a fighter. She is an advocate. Lillie travels the country telling her story in hopes of getting clinical trials open to children. She tells her story so the government makes changes to existing laws and creates new laws for kidney patients and living donors. Lillie has been to Capitol Hill to talk to legislators about the Living Donor Protection Act and funding for innovative kidney research like the Kidney X project. Lillie is still Lillie and a typical teenager. She loves hanging out with her friends, she loves boating and tubing, hiking in the mountains, all things Disney and most of all… dance! Lillie has been dancing since she was 3 and loves all genres. Lillie got to dance at Disney World in June 2019 in the parade down Main Street at the Magic Kingdom." - Lillie Enicke
Trisha P
DIAGNOSIS: IGAN
Our final story to share during IgAN Awareness Month. We meet Tisha Pruiett from Iowa, who walks us through her journey with IgA Nephropathy. She explains how physical activity has tremendously benefitted her. “I have had IgA Nephropathy for almost 20 years. I had a urinalysis when I was pregnant that showed protein and blood in my urine. It was suspected that I had IgA Nephropathy, but they did not confirm it until I had a kidney biopsy in 2006. After my diagnosis, I made some minor dietary changes, but one of the biggest changes I made was to increase my physical activity. I have always been active but decided to take up long-distance running. I have run 3 marathons, 2 half marathons, numerous 10 and 5Ks. My goal with my disease is to stay as healthy as possible so I can live a long life. I have a disease but I refuse to let it control my life!” -Trisha P.