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. 

 

 

 

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TELL A STORY DAY

TL 4-27 TELL A STORY DAY

GUARDIAN ANGEL FOR EMMAALYBLAZEHOPE TATTOOSPIRIT
ONCE UPON A TIME…

In honor of TELL A STORY DAY, I’ve collected some stories that I think need to be told.  We have what many refer to as an “invisible disease”.  Diabetes is not something that is typically visible, rather a very personal battle that happens behind closed doors.  To look at a person you cannot tell they are diabetic.  Just because it seems like a person is coping well with their disease is not a reason to assume that everything is just fine and dandy.  It is not.  We need a cure.  Soon.

What is diabetes?

Diabetes is the name given to disorders in which the body has trouble regulating its blood glucose, or blood sugar, levels. There are two major types of diabetes: type 1 and type 2. Type 1 Diabetes is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. Type 2 Diabetes is a metabolic disorder in which a person’s body still produces insulin but is unable to use it effectively.
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Max Sonnenschein writes:

Once Upon a Time my kid ate anything he wanted. Those were the days my friend. Oh how I miss the drive through windows and the pizza delivery boy. All that came to a screeching halt when a bomb name Type 1 dropped in our world so we had to give up all drinks w/ sugar and learn a carb to unit ratio that started to rule our meals. Oh yeah, bomb 2 blew up next. This time it was called Celiacs and something called gluten had to go. Well, can I tell you it’s in everything including pretzels. Just recently we discovered Glutino chocolate covered pretzels, gluten-free of course. Jake loves them. Did I mention that for a small bag they cost nearly $7! So pretzels are back on the island and life goes on. But we still have to count the carbs and inject insulin so even our gluten-free $7 pretzels have a larger price.

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LaTisha Conners writes:

Once Upon a Time we were a “normal” American family.  We functioned pretty much like other families.  We all did our daily activities and when the day was over, we slept.  Then my daughter began wetting the bed.  Not just once in a while, but quite often.  It was not just once during the night.  When we went in to see the doctor, we heard a diagnosis that changed our family life forever.  Type 1 Diabetes!  Our world has not been the same and we don’t sleep much at night anymore.  My daughter has had to learn to give herself insulin shots, using an orange and syringe filled with saline solution.  No, the disease does not cause any outward “signs”, but every activity of every day revolves around it. 

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Michelle Wheeler writes:

Once Upon a Time we did not have to think about what we fed our child.  But when my baby started vomiting uncontrollably, I had to get him to a doctor immediately!  The doctor said it was more than likely a virus that was going around and told me to keep her hydrated with juice and pedialite.  Just two days later, she was listless and nearly lifeless!  We took him to the emergency room and he was so dehydrated they could not even start an IV.  They stuck a feeding tube down his throat and did the standard blood tests.  That’s when we got the devastating news that our child was a Type 1 Diabetic.  Our small son has a disease?  It took a while for this to sink in, but we gathered our strength and began the fight.  That night at the emergency room his blood glucose was close to 1000!  He went to intensive care for the night, then was transferred to a room.  We learned all about our son’s horrible disease – how to give him shots and what we need to feed him.  I don’t think people understand how life-threatening this disease is.  Maybe people understand but just don’t know what they’re supposed to do with that information.  I think we all feel a bit helpless about the disease.

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Here is the story I wish – I wish – I wish I could tell, and hope to tell one day soon:

Once Upon a Time a lot of my friends and I had Diabetes.  Now, we do NOT!!! 😀