Rare Disease
04.14.2026
Like many who live with a rare disease, Shelbee Fraser struggled with “mysterious” symptomsa — starting when she was a child — before she finally received an accurate diagnosis.
It was only in 2017 when Shelbee finally found out she has Immunoglobulin G4-related disease, or IgG4-RD, a rare autoimmune disease1 that can involve a host of symptoms, ranging from fatigueb and weight loss to bulging of the eyes, shortness of breath and jaundice.2 Sinus infections were especially noticeable in Shelbee’s case.3
Shelbee says having a rare disease can be isolating — even when talking with family and friends — because not many people understand or can relate to it. “There was very little support or understanding of what I was actually going through,” she says.4,5
Before her diagnosis, Shelbee recalls, “I was left in situations where it made me feel like it was my fault. A lot of times I was asked if I was following instructions, if I was doing something to be making the symptoms worse, which led up to me feeling like I wasn't being heard; that it wasn't being taken seriously.”
Finally, Shelbee found the right doctor for her: Dr. William Fung, a Toronto rheumatologist.6
“Dr. Fung gave me a reason to keep trying,” Shelbee says. “He was willing to listen, and he wasn't afraid to admit that it is a rare disease and there are going to be times that we are going to have questions and we're not always going to have an answer. But he was willing to stand by my side and do what it took to find the answers — whether he found them or we found them together.”
Watch Shelbee’s story to see how meeting Dr. Fung helped her receive treatment that finally made a positive difference — and that helped her live with hope again.
Interview with Shelbee
My name is Shelbee, and I'm 32 years old.
I work in the automotive industry, and I live with a rare disease called IgG4 [IgG4-Related Disease].
Generally, I had many mysterious health issues my whole life, but, within the past 10 years, I started experiencing more severe symptoms that were becoming very alarming.
And things were not getting better, everything was getting a lot worse.
When I was about 21 or 22, I started developing severe sinus infections, facial pain and swelling.
I was sent to multiple doctors and nothing seemed to work.
A lot of times I was asked if I was following instructions, if I was doing something to be making the symptoms worse, which led up to me feeling like I wasn't being heard, that it wasn’t being taken seriously.
And I was left in situations where it made me feel like it was my fault.
It was really frustrating and discouraging.
We were looking for answers and all we were left with were more and more questions.
I was referred to an ENT [ear, nose and throat specialist] who knew that there was an issue, but regardless of all the tests that were done, there were still more questions than answers.
And he told me that he wasn't going to give up on me.
And he sent me to a specialized ENT who performed a surgery.
And that was the first time I heard the word IgG4. Once we were made aware that I had IgG4, it was a lot easier knowing that there was a label to it.
However, there were a lot of times that I would see a doctor and they would be asking me what I needed from them and what they could do for me, because they weren't familiar with it either, which is really scary — when you're looking for their help and they're asking you how they can help.
I was put on a standard of care for over a year and a half that resulted in some very serious side effects.
I gained well over 100 pounds, my mental health deteriorated, I was also isolating myself from every life event, and I was not able to enjoy the simple things or the things that you look forward to in your 20s.
Having a rare disease has taken a lot away from me. It changed my entire view on life and all the things that we look forward to like going on dates, going to events, having fun with your friends.
You're unable to do just simple little things like that without wondering, are you going to be OK? Are you going to be sick? Are you going to be able to enjoy it? Things started changing for me when I reached out to Dr. Fung.
I was looking for answers and one of my biggest concerns was I was looking for somebody that was going to look at me and see a future.
Even with having a doctor that knew how to help me, it was still difficult to manage the right care plan for me.
But Dr. Fung continued to advocate for me and he wasn't willing to give up. We were both going to keep fighting.
After working with Dr. Fung, it's changed in the sense that my body is not fighting itself 24/7.
There's still day-to-day struggles, but we actually have the peace of mind that we're on the right path, and it's not going to be a constant struggle.
I want to help somebody in the future that they don't have to go through all these struggles and that someone can actually listen, and someone can actually be there to help them instead of questioning them or making them feel like they don't have anything wrong with them.
After everything that I've gone through from the journey of being diagnosed with a rare disease, what gives me hope for the future is that there are care plans that are out there, that there are doctors that are out there that are willing to help you and stand by you, whether they may not have the answers and they may have questions too, they're going to give you what you need, and they're going to help fight the fight with you.