IgG4-RD & Rare Disease Day: The Power of Support, Awareness & Advocacy
Did you know, there are more than 10,000 different rare diseases impacting 300 million people globally?
Today, on Rare Disease Day, we recognize the millions of people living with rare diseases—many of whom face misdiagnosis, delays in care and limited treatment options.
What Makes IgG4-RD a Rare Disease?
A disease is considered rare in the United States if it affects fewer than 200,000 people. IgG4-RD likely fulfills this definition of a rare disease, its true prevalence is unknown right now due to a number of factors. The disease did not have its own International Classification of Diseases (ICD-10) code until late 2023, and for a variety of reasons is probably substantially underdiagnosed.
IgG4-RD is a distinctive condition because it:
Mimics other diseases such as cancer and other autoimmune disorders
Can affect multiple organs (eyes, pancreas, kidneys, lungs and more)
Has no curative therapy right now. Treatment focuses on suppression of inflammation and the management of symptoms
Suffers from lack of widespread awareness, even among health care professionals, because it wasn’t recognized to be a unique condition until 2003
Many patients spend years searching for answers. Some receive unnecessary surgeries before getting the right diagnosis. This is why awareness is critical.
The Power of Support: No One Fights Alone
Having the right support system makes managing IgG4-RD easier. Family, friends, faith and the rare disease community play a huge role in helping patients navigate this journey. Some find strength in loved ones who offer constant encouragement, while others rely on faith or the connections they have built within the IgG4-RD community.
Kim and her wife Jess (pictured right), who have shared their journey with IgG4-RD, emphasize the power of support when faced with a rare disease.
For many, support is what keeps them going through the hardest moments:
My wife, family and close friends help me the most. A very close second is the IgG4-RD community. It’s comforting to have people who truly relate. - Kimberly
Karen shares a similar thought to Kimberly:
The care and compassion of family, friends and doctors have been essential. Additionally, my faith has helped me keep a positive outlook.
For caregivers, supporting a loved one with IgG4-RD comes with its own unique challenges. Many caregivers, experience shifts in their lives as they adjust to the unpredictability of the disease.
Positive quality time with my wife is really helpful. There was a long period when she was very limited which impacted our our time together. Thankfully, this has changed. - Jess
But caregivers also need support and one of the biggest struggles can be finding knowledgeable doctors and treatment plans for their loved ones.
Amy shares, What would help the most would be knowledgeable team of providers and hope.
Managing IgG4-RD
Since there is no cure for IgG4-RD right now, treatment focuses on controlling inflammation, preventing organ damage and managing symptoms such as pain and fatigue specific symptoms that stem from organ dysfunction. However, every patient’s journey is different—some respond well to treatment while others may face challenges in finding the right medical care and treatment.
For those who have access to effective treatment, it can make a huge difference in maintaining stability and improving quality of life.
The most helpful thing for me is knowing that my disease responds to treatment, particularly rituximab infusions. And, of course, the unwavering support of my spouse. - Michael
Lindsay also shares what helps her manage IgG4-RD:
Rituxan, hiking, this amazing community of IgG4-RD patients/caregivers/doctors/researchers and an absolute refusal to give up!
Finding the right treatment plan isn’t always straightforward. Some patients struggle with insurance barriers, provider inexperience, or long diagnostic delays. This is why raising awareness and advocating for better access to specialized care is critical.
Finding Strength in Everyday Moments
Beyond medical care, patients and caregivers find hope in daily routines, hobbies, and mindset shifts. One patient shares:
I am trying to concentrate on living life to the fullest within my means. Enjoying the little things-new fallen snow, time with my husband and dogs. Praying for myself and others.
Mary shares that what helps her is Just trying to keep busy.
Even though life with a rare disease is unpredictable, these moments of joy, connection, and perseverance keep many going.
Why Rare Disease Day Matters
Rare Disease Day is about raising awareness, driving research and improving the lives of those affected.
Many rare diseases have no cure, but with increased awareness and advocacy, we can push for:
More research into IgG4-RD
Faster, more accurate diagnoses to prevent long-term damage
Better access to specialists who understand the disease
How You can Help Raise Awareness:
Rare Disease Day is today! Here is how you can take action:
Share this post to spread awareness of IgG4-RD and rare diseases
Talk to your doctors—many physicians have never heard of IgG4-RD
Support rare disease organizations that advocate for research and funding
Encourage lawmakers to prioritize rare disease research
What helps you (or your loved one) manage life with IgG4-RD?
Share in the comments—your story may help others feel less alone.
We encourage the community to share your story – one of the best ways to raise awareness about a rare disease is by sharing stories from the people who live and manage this disease daily. Share your story HERE
