I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
Mainly, just how debilitating the fatigue can be. This is not just being tired because I do too much. This is getting up in the morning with very little energy and the smallest task is monumental.
Hi
,
I completely understand the 'getting up in the morning and already feeling fatigued'...
It's now rare when I actually feel refreshed. In my case, I think it's the chronic pain I experience that seems to wear on my sense of peace... perhaps, too, inflammation that my body is always dealing with.Sigh... It's truly impossible to explain this sort of fatigue to others who don't experience it, but a bit less sad to know I am not alone in it...
Thank you for sharing,
Gina, Team Member
That EDS isn't cool or fun. It's exhausting and terrifying
So sorry that EDS has brought both exhaustion and terror to your dear child...I hope that more people can understand the impact of it on both those suffering from it, and their families.
More hugs,
Gina (Team Member)
The fatigue I live with and the days I am not able to function well. I never know from day to day how I will feel.
I am contemplating lung transplant. Have been through work up but when presented before transplant committee in January they said I was too sick. So my Drs and I are working to fix those concerns. 
, I'm sending you love, light and all the positive energy I have towards healing so that you can "ace the exam" with the transplant team. And hoping it will make a real, meaningful difference. Then you can chase that son of your around the house! - lol- Warmly, Donna (Team Member)
How easy it is to get misdiagnosed and mistreated
It really is far too common to receive a misdiagnosis and then potentially inappropriate treatments when one has a rare disease. We often don't luck out along our journeys and find primary care providers who can recognize our diseases...May I ask what rare disease or diseases you are diagnosed with? I assume from your share that you journey to diagnosis was not easy...would you like to share more about it?
In my case, it took getting diagnosed with one rare disease (MAC Lung Disease) to eventually learn that another rare disease, Cystic Fibrosis, had been plaguing me my entire life. It also took a lot of courage and effort and money on my part to get myself to experts in MAC (in another state, requiring a 10 day stay at an AirBnB to get all of the testing done) to be able to finally be properly diagnosed with CF.
Gina Miller,
Team Member
