Flexibility is critical when talking about raising a child with a rare disease.

It has been a long time friends.

The Raising Rare Team has been dealing with a number of challenges since Season 5 ended. As a result, we have not been able to reconnect and publish an episode until now. We are so glad that you came back!

In our Season 6 Opener, we talk about some of those challenges including frequent hospital visits, mental health, job changes, and other family members. But we also talk about some of the kiddos’ favorite books and the reasons that we love to share our discussions.

And there is a surprise…

Listen all the way to the end and then post a review that includes a comment about how our surprise makes you feel!

Season 5 has been fantastic. We feel so thankful to our guests for sharing their stories.

Which emotion-character from “Inside Out” are you? Sanath and Brittany reveal the characters they relate to the most. Rare parents experience the full range of emotions, sometimes in the period of a single day, and it can get very tiring.

In the season finale, we talk about the need to step away from the grind of advocacy, social media, and all the other commitments we choose to make. We talk about retreating into our cave to discover the next leg of the journey.

We are taking a bit of break too. We plan to be back in early 2025. Until then, please go back and listen to our other seasons. You will be surprised by how many of our previous guests have become well-known names in the rare community.

Mentioned in this episode:

Invitation to Check Out The Atlas

The Atlas

As a new parent, you feel like “oh, my gosh, I must be going crazy” or…

…maybe the doctors don’t even understand what is going on.

New parents do not know what to expect. There is a lot of self-doubt and questioning even in the best of circumstances. Parents of kiddos with rare diseases are faced with an added wave of unexpected symptoms and problems with their children. Naturally, they expect that the healthcare system will help them.

But when a young patient keeps showing up with a variety of unexplained symptoms, that very healthcare system starts to struggle. Physicians and other providers are trained to recognize and diagnosis diseases. They are taught that they are experts upon whom patients and families rely. When they don’t have answers, they too can feel vulnerable.

In some instances, those doctors begin to question the parents and their motives. There is even a diagnosis for this, Munchausen By Proxy (MBP). The problem is that the signs of MBP and just being a good parent of a rare child look very much the same.

Donna Sullivan shares about traumatic experiences of those suspected of imagining their kids’ illnesses. Their relentless advocacy was costing them their credibility.

Sadly, this situation is more common than it should be.

Donna is now working on a film called, “Complicated” that raises awareness and addresses this issue.

Mentioned in this episode:

Invitation to Check Out The Atlas

The Atlas