UNDIAGNOSED CHILDREN’S AWARENESS DAY

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https://youtu.be/l9V2r99rs1Q

cropped-GEE_0012Wear pink or blue today to support this special day in the U.K.

Of course, when I think of a disease that goes undiagnosed, my mind immediately goes to type one diabetes.  It goes undiagnosed, or more commonly, it is misdiagnosed.  Reegan comes to mind.

Reegan Karice Oxendine was a toddler when she died in September 2013 from undiagnosed type one diabetes.  She was sick from the age of 14 months, so her parents took her to the doctor many times.  She was misdiagnosed with acid reflux disease and put on a prescription to treat it.  It didn’t work and her condition worsened.  She was finally taken to the emergency room where they checked her blood glucose.  The test came back with a reading of over 1,000 mg/dL- !  She was air-lifted to the Children’s Hospital at UNC in Chapel Hill.  Come to find out, her blood sugar levels had been at near fatal levels for at least 3 months – she died 2 months later.

It’s sad that this is still going on today. If more Dr.’s made a simple blood test part of the routine check up, maybe they would be able to catch it sooner, and could prevent them ending up in the hospital.  – John Manganiello

The truth is, as Americans we like to think our medical community is on top of these things, but I’ve read account after account where young children succumb to type one diabetes.  They don’t get diagnosed and begin treatment in time.  Why does this happen?

There should be a law in place that says doctors MUST perform a simple blood test as part of the routine check up!  It’s not pleasant to think of a blood draw, but it’s surely better than the alternative, isn’t it?

Today’s post is a reminder that there are children who go undiagnosed with not only type one diabetes, but many diseases that lead to horrific consequences down the line.  It’s such a shame that there are not laws in place – not state by state, but from coast to coast here in America, that protect our children!

It’s my hope and prayer that these children will not be INVISIBLE and forgotten anymore.  A case like Reegan’s should never happen!  It’s unfathomable that she went undiagnosed for such a long time.  Rest in Peace, sweet baby.

How many children have to fall through the proverbial cracks before we get smarter about the diagnosis process?  Seriously – if laws need to be passed, let the passing begin because, it IS our future we’re talkin’ about here.  If we really value life like we say we do…  let’s FIX this!  Jus’ sayin’…  🙂

 

 

 

 

 

RARE DISEASES DAY

TL 2-28 RARE DISEASES DAY

There are special people in this world who are afflicted with rare diseases.  Today we observe RARE DISEASES DAY!!!  It’s so frustrating to have an invisible disease, especially when it is misunderstood by most people.

The family is one of nature’s masterpieces.  – George Santayana, The Life of Reason

The focus this year is to join for better care.  Caring for people living with a rare disease is multi-faceted.  Some patients have access to treatment, while other have no treatment options.  Some patients are moderately independent while others require intensive physical assistance and equipment.

To understand what is needed for proper patient care is important if we are to help.  We will draw awareness through this post.  Hopefully after you read this, you will not be ignorant about some of the more rare diseases that folks and their families struggle with on a daily basis.

A rare disease is one that affects 1 in 2000.  Over 6,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

Rare diseases

  • May involve chronic illness, disability, and often premature death
  • Often have no treatment or not very effective treatment
  • Are frequently not diagnosed correctly
  • Are often very complex
  • Are often caused by changes in genes

Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatments.  Therein lies the frustration for these patients and their families.

For a database of rare diseases, please click on this link – https://www.rarediseases.org/rare-disease-information/rare-diseases

I have found so much help through the Diabetic Online Community on facebook.  It’s my hope that people dealing with rare diseases might meet up with others facing similar challenges through social media.  There really is strength in numbers.  It helps so much to know you’re not going through a disease process by yourself.  I’m also so thankful for information through reputable websites such as WebMD.  The symptom checker on there can be so helpful in directing a patient to the proper diagnosis, or at least get you started.

For everyone battling an invisible or rare disease, I want you to know God loves you.  He sees what you’re going through and hears every prayer you say.  I’m praying for you too.