Patient Worthy was a media partner at this year’s NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare Disorders (NORD) that centers on the rare disease patient experience and features a variety of speakers, patient stories, and educational sessions that are designed to help the rare disease community.

This year’s event was entirely virtual in light of the ongoing COVID-19 pandemic. We had the opportunity to attend several of the info sessions at the forum. One of the ones that we checked out was titled “Aging with a Rare Condition.” The session focused on what it means to get older while living with a rare disease and the challenges that can appear.

Outcomes in rare disease vary greatly and depend on a number of factors. Some diseases have no available treatments and may ultimately be fatal. However, some diseases that are less severe and can be managed will present more as a chronic condition. Sometimes these conditions stay relatively the same while others continue to progress. In any case, advancements in treatment mean that more rare disease patients are living into old age.

Speakers for this session included:

1. Patricia Sullivan, North Carolina Volunteer State Ambassador, NORD Rare Action Network
2. Kate Lorig, MS MPH, Dr. PH, Partner, Self-Management Resource Center
3. Nathan Peck, Founder and CEO, Cure VCP Disease Inc.

As a patient ages, concerns about planning for future care can be a big challenge. Living with a rare condition can be isolating already, and this problem can be even more difficult as patients age. Building resiliency and finding fulfillment later in life is also another consideration for older rare disease patients. While these concerns apply to the aging population as a whole, they can often feel magnified for rare patients.

Patricia was 59 when she was first diagnosed with acromegaly. The diagnosis came at a difficult time after she had moved across the country from California. 

Kate Lorig meanwhile has lived with Gaucher disease for almost eighty years, being diagnosed at age three. For Kate, there are a number of factors that can affect rare disease patients as they get older.

1. At age 20 she decided not have children. This means that she will not have family to support her in later years. At that time there was no treatment for Gaucher and she didn’t want to pass on any genes that could play a role in the illness.
2.  Other health conditions are also bound to show up as the patient ages, which may interact with the rare disease.
3. There is very little research on how most rare conditions affect aging.
4. In addition, there are essentially no experts or advocacy groups focused on aging with a rare disease.

Nathan lives with VCP disease and was diagnosed at age 39. His mother and aunt both had the illness and have since died as a result. He also has other living family members that have VCP disease as well. Nathan grew up seeing his mother get older while dealing with the illness. This debilitating illness can rob patients of much of their mobility over time, and his father had to spend a lot of time taking care of his mother as the illness progressed.

VCP disease is slow progressing and while Nathan is retired and on full disability, he still retains his movement; however, understanding that his current abilities won’t last forever is a major concern as he continues to age. 

Staying active in your life and continuing to keep the mind and body busy are critical aspects of maintaining quality of life for rare disease patients as they get older.

“When I got on long term disability I was really worried about being stuck in the house, sitting around and doing nothing. Starting Cure VCP Disease has helped me stay engaged with my life.” – Nathan

Aging can feel overwhelming when living with a rare disease, but with a proper support system and access to necessary resources, patients can continue to enjoy a decent quality of life in their later years.