Having a child with a rare condition can be very challenging. No one has ever heard of it even many of the doctors. The supports and services offered for the specific condition is very limited to none. Face to face connections often don’t happen unless the specific condition has a foundation that holds a conference. The diagnostic odyssey for many is very long and tedious.
The diagnostic odyssey continues for those with children who are still undiagnosed. They hope for a diagnosis, maybe one not so rare but will do with even a rare one. They would like something that can help them with a direction. The search for another like your child can be tiring and the doctor’s ready to give up can be frustrating.
Parents of children with undiagnosed and rare condition can often relate well. Rare knows the challenge of being undiagnosed and undiagnosed knows about many rare conditions through their search.
Let’s not feel alone in our local community any more share here and let’s see about making some face to face connections.
The diagnostic odyssey continues for those with children who are still undiagnosed. They hope for a diagnosis, maybe one not so rare but will do with even a rare one. They would like something that can help them with a direction. The search for another like your child can be tiring and the doctor’s ready to give up can be frustrating.
Parents of children with undiagnosed and rare condition can often relate well. Rare knows the challenge of being undiagnosed and undiagnosed knows about many rare conditions through their search.
Let’s not feel alone in our local community any more share here and let’s see about making some face to face connections.