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