The Emotional Toll of Rare Diseases

The Emotional Toll of Rare Diseases

Perthes.org is proud to be a Global Genes RARE Foundation Alliance member! Global Genes enlists over 500 foundations who are committed to advocacy and awareness and alliance for the rare disease community. Today we’re proud to share an article brought to our attention by Global Genes that has given the rare disease community much to contemplate over the past 5 years since this Rare Disease Impact Report was published by Shire.

In 2013, exhaustive research was published that identified 3 key deficits in the rare disease community made of policy makers, medical professionals, families, and patients. Where did we fall short? Lack of resources to address rare diseases in the medical community. A significant financial impact for rare disease diagnosis and treatment/management. And finally, with staggering statistics to back it up:  Rare Diseases Take a Major Emotional Toll on Patients/Caregivers.

While many in the midst of fighting a rare disease might say that is stating the obvious, here’s some data Shire reported:

Rare disease patients reported their disease caused:

  • Depression (75% in the US, 69% in the UK)
  • Anxiety and stress (86% in the US, 82% in the UK)
  • Isolation from friends/family (65% in the US, 57% in the UK)
  • Less interaction with friends/family (70% in the US, 68% in the UK)
  • Worry based on future outlook of disease (90% in the US, 91% in the UK)
  • Worry based on lack of information available on disease (83% in the US, 81% in the UK)

Caregivers of rare disease patients felt similar psycho-social concerns and feelings of:

  • Depression (72% in the US, 65% in the UK)
  • Anxiety and stress (89% in the US, 88% in the UK)
  • Isolation from friends/family (64% in the US, 54% in the UK)
  • Less interaction with friends/family (55% in the US, 45% in the UK)
  • Worry based on future outlook of disease (97% in the US, 94% in the UK)
  • Worry based on lack of information available on disease (87% in the US 84% in the UK)

The causes of these feelings are many, and to many they are familiar: delayed diagnosis; confusion over treatment plans, appointments, treatments; physical isolation; caregiver burnout; guilt; frustration. The fix isn’t quick or easy but it is important. Through community outreach and the online community we are now more than ever connected. As a Rare community, our voice is louder. And people are listening!

The International Perthes Study Group (IPSG) is conducting a Patient Reported Outcomes or “PROMIS” study to determine the Quality of Life in Patients with Legg-Calvé-Perthes Disease! To find out how to enroll or participate, contact your IPSG surgeon.

We know the emotional toll is real. It was a key topic at the first and seasons Perthes Conference. Perthes.org SMD talked about that last week as a Perthes Sister and BD & Perthes Mom BD had a rough night this past Halloween. It’s hard for other kids to express compassion for something don’t understand. So, tell us, what’s your best coping mechanism? For your kid, and you as a parent?

You can download the full Rare Disease Impact Report from Shire here: ShireReport

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