Read It Now! What Two Words Empower DBA Parents?

Did you ever hear about a pacu fish? Not me either. How about compression apparel? What’s that? Did you know sunglasses for dogs have been invented? Say what?

There are so many unique and sometimes strange things I have never heard of. And before today, Diamond-Blackfan anemia (DBA) used to be on the list.

Diamond-Blackfan anemia is a disorder of the bone marrow. In Diamond-Blackfan anemia, the bone marrow malfunctions and fails to make enough red blood cells, which carry oxygen to the body’s tissues. The resulting shortage of red blood cells (anemia) usually becomes apparent during the first year of life. Symptoms include fatigue, weakness, and an abnormally pale appearance (pallor).

The Seattle Children’s Hospital Research Foundation hit a home run with a resource website with info and links that address:

  • Defining Diamond-Blackfan Anemia
  • Symptoms of Diamond-Blackfan Anemia
  • Diagnosing Diamond-Blackfan Anemia
  • Treating Diamond-Blackfan Anemia

Trying to find an underlying diagnosis for many conditions can be a very long and frustrating experience. With more rare conditions, a diagnosis can often take many years.

Physicians will sometimes say that a child has an “undiagnosed rare condition” or an “undiagnosed genetic condition” when they are unable to find a diagnosis for certain characteristics or symptoms. In fact, finding an underlying diagnosis for many conditions can be a very long and frustrating experience.

But, there’s one question I keep reeling on:

How should parents deal with not having a diagnosis for their child?

Even if your child does not have a diagnosis, I’m thinking communication is key—it would be important to keep taking your child to your pediatrician or family doctor for follow-up visits.

Your child’s regular doctor can keep track of health changes that might offer clues for a diagnosis. In addition, your doctor may become aware of new information that could be important in diagnosing your child as time goes on.

The steadfast factor is the diagnosis equation is TIME. Too often, parents hear…

  • May take years to…
  • So few cases, there is often not a doctor who can…
  • Long time to match symptoms to a possible diagnosis…

So, I’m thinking of two powerful words for parents and caregivers who have children living with Diamond-Blackfan anemia (DBA)—diligently patient.

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