Search This Blog

Saturday, February 29, 2020

Rare Disease Awareness Day 2020

IMAGE CREDIT

Today is Rare Disease Awareness Day and as a way of paying homage to it, I've posted a "promo" image atop this entry.

This annual "holiday" was initially brought to my attention (through a 2018 Facebook posting by my acquaintance (Catherine C) and I blogged about it at time stating:

According to a number of sources, including NORD (The National Association for Rare Disorders), "In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children."
Therefore I was thankful to see Catherine's posting re this year's Rare Disease Awareness Day. 2019's theme is SHOW YOUR STRIPES. Another one of NORDS's web-pages points out "The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. In the spirit of raising awareness regarding rare disease issues and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes."

Within one of my earliest entries here on Blogger, I admitted 'that I often hesitate to admit that I have Neurofibromatosis-Type-One (NF-1) because people's attitudes towards me having it have caused great emotional pain that has often been harder to live with than any pain caused by a neurofibroma.

However, I went on to say, Meanwhile, it is important for me to mention the condition because not only has it shaped my art-work, but I owe the community of those diagnosed with NF-1 as well as NF-2, any awareness that can be raised. Joseph Merrick, the man associated with Elephant Man's Disease (often confused with NF) used to sign his letters with this poem by Isaac Watts:

'Tis true my form is something odd,
But blaming me is blaming God.
Could I create myself anew,
I would not fail in pleasing you.
If I could reach from pole to pole,
Or grasp the ocean with a span,
it would be measured by the soul,
The mind's the standard of the man.'

In the aforementioned entry, I also stated, As with other folks who have NF-1, the consequences have impacted my ability to be considered for decent employment and there have been many awkward social implications throughout my life in terms of prejudice from those who fear disfigurement.

At the time of last year's entry re Rare Disease Awareness Day, I confessed that My way  of showing my stripes" has been through blog posts and through my presentations about the birds featured in my Words In Our Beak book series.


WORDS IN OUR BEAK BOOK SERIES

When the blog entry, I've been referencing was published, I'd recently given a presentation at The New York Society for Ethical Culture (NYSEC) and the blurb for it stated:

"Studying the wild birds in NYC and surrounding areas has important implications for understanding the similarities of human behavior and the behaviors of members within the avian community. The topics I will cover in my presentation include how birds teach us about the human race in such matters (to name a few) as finding our voice, ways in which we compensate our behaviors to meet our needs, accepting our physical appearances, and how bullying impacts our lives."

Additionally within that blog entry I include the fact that One of the examples I use (in my presentations) re the implications of accepting our physical appearances (as birds must do too) has to do with the birds that are afflicted with Leucism, as is the case with the female house finch seen in the next images (she's "hiding" in the second picture).

LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES

The two pictures directly above are featured in that entry but here are some others (directly below) that honor the same house finch afflicted with leucism.

LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES 
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES

Something else which I point out in my 2-28-2019 posting is the fact that Birds often avoid a bird who has this affliction, much like people tend to avoid someone with a physical affliction. 

But fortunately for this sweet bird, she seemed to find a friend in a lone female house sparrow (as seen in the next picture where they are perched on a railing that surrounds my garden).


LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES

The picture directly above is featured in that entry but here are some others (directly below) that honor the same house finch afflicted with leucism who is befriended by a house sparrow.

LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES

Additionally, another element which I point out in my 2-28-2019 posting is, Not only do birds tend to avoid a bird who has Leucism, they will often bully them! This leucistic house finch seems to be aware of this fact as evidenced in the next pictures where she is cowering on my bird feeder to hide from a male house finch. (All but one picture in the next set of images is included in the post that I've been referencing.)

LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES
LEUTISTIC FINCH FEATURED IN V-3 OF MY BOOK SERIES

As of this posting in addition to my making myself available to give talks in order to raise awareness re bullying one might experience if they have NF-1, I have now written a book length piece on the topic and have posted videos describing my endeavor on both You Tube and Vimeo.

Video 1 on Vimeo:
Video 1 on You Tube:

Video 2 on Vimeo:
Video 2 on You Tube:

Hopefully my book will be published soon and awareness re the rare disease of NF will be raised and spark awareness of other rare diseases.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.