IgAN: Getting the Conversation Started

Diagnosed with IgAN after a decade of symptoms

I was diagnosed with IgAN in 2001, a time when very little was known about the disease and there were very few options for treatment.

Although I had symptoms from around 1990, it took over a decade for them to be investigated.

Finding community to cope with IgAN isolation

Once diagnosed, it was a journey of isolation as I did not know anyone else with the disease and did not have many answers. This impacted my mental health, and was very isolating.

Finding communities of others with IgAN helped with those feelings of isolation; and becoming active in my advocacy for IgAN patients brought a lot of purpose.

Living with Stage 4 IgA Nephropathy and fatigue

Currently I am at Stage 4 with a GFR of 20. I find my fatigue is quite significant and daily tasks are more difficult than they used to be. Fortunately, my children are older and quite independent, which allows me time for my own self-care.

Self-care strategies that help me with IgAN

I try to focus on good nutrition (that is one thing I struggle with at times – the healthy meal prep), exercise that's appropriate for me, a balanced work schedule, and participation in activities that I enjoy, such as reading.

Questions about your IgAN journey

Communities such as this one help to connect patients and help get their stories out. I'd love to get this conversation started and hear about your experiences with IgAN!

IgAN diagnosis

IgAN treatment options

Mental health & IgAN

Caring for yourself with IgAN

Caregivers of people with IgAN

Coping with IgAN

Why sharing IgA Nephropathy experiences matters

IgAN, like any other rare disease, can be very isolating. The diagnostic experience itself can be overwhelming, while the diagnosis of a chronic illness for which there is no cure can impact one's sense of self.

Dealing with these issues while living with the reality of the physical effects of IgAN can be difficult. There are so many aspects of this disease: the diagnosis – length to diagnosis and ease of diagnosis; treatments – what options will work; mental health – how to cope; balance and self-care – taking care of yourself; caregiving for others – it can be difficult but do you have a choice; and daily struggles – such as diet, work.

Over the past few years, I have really learned the importance and power of sharing experiences with other patients.

Not only is it a way to connect with each other, it's also a great way to learn and have questions answered, get different perspectives, and know that we are not alone.

Being involved in and participating in forums can be a form of self-therapy.

It's also a way to raise awareness of IgAN and help you to find and amplify your voice, a form of advocacy. Let's keep sharing and try to keep the conversation going!