What is the most frustrating or difficult aspect of living with a rare disease?

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Patients Cold Agglutinin Disease

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Hello everyone, 

How are you today? emoticon cute

As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, challenges, frustrations and more.

So, what is the biggest challenge you face whilst living with a rare disease? Is it a particular symptom? Is it the lack of information or awareness of your condition? How do you cope with these challenges?
@Funfun111@Maryjean@Andyblack@nurseperl1123@Nylahkay21@kovolk@SusanJBR@tnewman01@Sarah12535@EpiEpy@Mustang08@Natassia@cathybuffalo@Bearbo@Skinsfan23693@AlphaBehemonth@Twettybird@PaulaKay‍ 

Feel free to share your stories and experiences here!

Take care,
Courtney

Beginning of the discussion - 12/19/20

What is the most frustrating or difficult aspect of living with a rare disease?


Posted on

The hardest thing about living with this condition is never really knowing your body.  It like being trapped in a prison in a foreign country

What is the most frustrating or difficult aspect of living with a rare disease?


Posted on

Not many doctors have a good handle as a whole treatment for Scleroderma, some just say it, others just assume it is like Lupus, but knowing how it effects each organ over time and what to do is evasive. So I must see many doctors, and working with VA on the issues is like pulling teeth from a running mule. Then there is the loss of assets and lively hood from a rare disease. You end up on SS and VA funds and can't work. Mentally and emotionally drained by those who you can only hope knows at least what you do. But Scleroderma experts are far and few between and require travel to meet. But the dear in the Headlights look I get when I mention Scleroderma is frustrating, and I can see why more help is not available or cure has not been found.