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Thursday, February 28, 2019

Rare Disease Awareness Day


It was brought to my attention (through a Facebook posting) yesterday by my acquaintance (Catherine C) that Rare Disease Day is being observed on February 28th this year.

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."

She advocates for this cause due to the fact daughter has a rare disease (Klippel-Trenaunay Syndrome AKA Fibro-Adipose Vascular Anomaly OR Kawasaki Disease). As it happens, before I saw Catherine's posting, I had a very unpleasant experience re my rare disease (Neurofibromatosis).

I was speaking over the phone with a woman re the delays in my having a marketing intern when she asked me how I addressed my "skin condition" when meeting with people for the first time. I told her that I did not have a skin condition, rather, I had Neurofibromatosis (NF), a neurological condition in which one of the manifestations causes lump and bumps (neurofibromas) to appear all over the body.

Her response was to tell me that I should work with an intern by phone because they might be afraid of catching something from me. I assured her NF is not contagious but she still insisted that I work with one by phone.

This will probably be next to impossible due to the cable issues I've been having with Verizon (my landline carrier) which will not be resolved until April third and besides, if I were to have an intern I would need to do some of the work in person.

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."

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. Here's a copy my blurb for the presentation I made at The New York Society for Ethical Culture (NYSEC):

"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."

One of the examples I use 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).



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).


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.





The Muscovy duck is another bird (seen in the next photo where she is standing on a pier as well as a rock at the Hudson River) who has been discriminated against due to aspects of her appearance.



I’ve read that in one of ducks and clucks blog posts that “the most obvious character of a muscovy is the red/pink facial skin” and I’m told bird rescuers have reported that “their skin can be quite bumpy, exaggerated, and frankly, gross, with a knob on top of the bill and lumps all over.”

Here’s a picture from a Wiki Page which illustrates her facial bumps (all the other photos of her in this blog post are mine).


The Muscovy's so-called "odd warty growths," remind me of my neurologically-based medical condition, Neurofibromatosis Type One (NF-1),

But unlike yours truly, she seems to laugh off derogatory remarks...


... and to continue to take pride in her looks (as you can see in the next photo where she is preening)...


... and concentrate on those who appreciate her, such as pigeons.



I'm aware that there are times that members of the animal kingdom do pick on ones deemed to be inferior, but this was not the case when I witnessed members of the wildlife community spending time with this Muscovy duck; and it was most refreshing!

A couple of fun facts re the muscovy (also from the ducks and clucks blog:) "They are the only ducks not descended from mallards. They’re not that closely related to other ducks, and don’t speak the same language. They don’t quack, but girls make a trill sound and boys make a huff huff sound. They’re pretty quiet compared to other ducks. Muscovies are originally a South American tree-perching bird. Muscovy ducks and other ducks have a nictitating membrane, or second eyelid. Cats have one too. Duck eyelids close from the bottom up as much as the top down, but the inside eyelid or nictitating membrane closes from the front to back. Unlike cats, the nictitating membrane on ducks is see-through. They close the membrane when they swim sometimes so their eyes stay protected while they forage for bugs and food on the bottom of a pond."

By the way, all the bird types featured here are included in my book series, Words In Our Beak.



Here's the purchase info:
Volume One: ISBN: 9780996378529
Book Seller Info: http://bit.ly/2AFZDCz
Amazon: http://amzn.to/2zxVujM
Barnes & Noble On-Line: http://bit.ly/2AAnB26
book culture On Columbus (a bookstore on the UWS in NYC): http://bit.ly/2FsC1Uf

Volume Two: ISBN: 9780996378536
Book Seller Info: http://bit.ly/2q75g8e
Amazon: https://amzn.to/2DY0mz0
Barnes & Noble On-Line: http://bit.ly/2G65m6H

Volume Three: ISBN: 978099637853
Now available on Amazon @ https://amzn.to/2IYkmpA and can be ordered from any place selling books by giving them the title and/or ISBN which is 978099637853

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