120 ~ Why the hype? Part 1/4 ~

The significance of

R – Raising

A – Awareness

R – Recreational

E – Events

The definition of a Rare disease

Dysautonomia International is pleased to partner with the National Organization for Rare Disorders (NORD) to celebrate Rare Disease Day.

Did you know that overall, rare diseases are not that rare?

1 in 10 Americans have a rare disease.

That’s over 30 MILLION people, and there are even more people with rare diseases around the world.

Two thirds of people with rare diseases are children.

There are over 7,000 identified rare diseases with new types being discovered every year.

What is a “rare” disease?

What are some examples of rare diseases?

Rare diseases are present across the spectrum of medical conditions. Most types of cancer are rare diseases.

There are also rare neurological and neuromuscular diseases, metabolic diseases, chromosomal disorders, skin diseases, bone and skeletal disorders, and rare diseases affecting the heart, blood, lungs, kidneys, other body organs and systems.

Within the realm of autonomic disorders there are several rare diseases such as

🔵 Autoimmune Autonomic Ganglionopathy,

🔴 Baroreflex Failure,

🔵 Autonomic Dysreflexia,

🔴 Multiple System Atrophy,

🔵 Pure Autonomic Failure,

🔴 Familial Dysautonomia,

and

🔵 Dopamine Beta Hydroxylase Deficiency

What are some of the problems experienced by people who have rare diseases & why is awareness so important?

⚠️ Difficulty in obtaining an accurate diagnosis

⚠️ Limited treatment options

⚠️ Little or no research being done on the disease

⚠️ Difficulty finding physicians or treatment centers with experience in treating a particular rare disease

⚠️ Treatments that are generally more expensive than those for common diseases

⚠️ Reimbursement issues related to private insurance, Medicare, and Medicaid

⚠️ Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease

⚠️ Feelings of isolation and of having been abandoned or “orphaned” by our healthcare system

What can you do to help?

Kindly share these blog posts on your whatsapp status, social media accounts, e-mail or wherever possible.

For a list of other easy ideas to help spread the word about Rare Disease Day, please read the next post ➡️

I’ve broken it up in half to make it easier for reading & understanding purposes.. Also due to the important content of this post for professionals in SA to become aware…

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