NF, the Pope and the 1:3000

[ChazII]

The Pope did more to raise awareness about this genetic disorder with his one simple gesture than any other leader.


http://www.ctf.org/Learn-About-NF/What-Is-NF.html


Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

May is NF Awareness month. Yet, the Pope's actions today sparked more discussion than the NF community could hope for.

Perhaps now more folks will invest 15 minutes or so of their time and learn more about NF.

[hrmjustin]

1. I am very glad he did this. I pray for a cure.

[ChazII]

3. Being a mutant,

your prayers are appreciated.

[hrmjustin]

4. .

[Vashta Nerada]

2. ...

[hrmjustin]

5. What? Why the little facepalm?

[rug]

6. Thanks for this information.

[sabrina 1]

7. As the aunt of a beautiful little girl, a real life angel, who did not survive the desease, I am

so grateful to see this pope or anyone else, try to draw attention to this illness. Still mourning the loss of a child who was brilliant, artistic, constantly in pain but who spent her young life thinking only of others, refusing medication to ease her pain so she could remain conscious enough to create art work to raise funds for the children's hospital where she spent most of her young life, and did so, I and my family are more than moved by the pope's effort to raise awareness of this rare illness.

[rug]

8. I'm speechless.

[ChazII]

9. Your niece was a courageous

child who knew more about life and love than most will ever know. I know she made a positive impact on those around her. Like your family, we are more than moved by what the Pope did when touching the man.

[sabrina 1]

11. Thank you. She did impact so many lives, she was a given an award as 'young person of the year' for

her successful fund raising efforts for the hospital, but did not live to accept it. Her sister and dad accepted it for her. There were over 2,000 people at her funeral including bikers who heard her story. But it is a rare illness and not much is known about it and if, as in her case, a tumor forms in a critical area, inside the body, where most of her tumors formed, there is little that can be done about it as of now. From what we know, it is hereditary and her sisters, while free of the desease themselves, might pass it to their children.

She was a gift to everyone who knew her. I feel almost as if I am violating her privacy in saying as much as I have as she never wanted attention at all. But seeing this photo and some of the negative comments right here on DU, I think she would have wanted someone to explain what it meant to those who have suffered from this rare illness, and their loved ones.

I hope your family experiences peace and thank you again for your supportive comment.

[ChazII]

12. NF does not work that way.

If her sisters do not have NF they will not pass it to their children.

Thanks to children like your niece more folks know about NF than ever before. The NF community rejoiced when the disorder became a subplot in an episode of Bones this season. One of the writers has a child with NF2 and the show gave facts right from the Children's Tumor Foundation.

The best thing we can do to honor her memory is to make even more folks aware of NF and what better place than right here at DU? Each May folks could change that avatar to an NF avatar. If they would do that for one week that would show compassion.

[Brigid]

10. How about another hug?

[malaise]

23. Wow

You never know the pain others are suffering

[LittleBlue]

13. The only reason I had ever heard of NF

is due to speculation that it may have been one of the diseases that the Elephant Man suffered from. Otherwise I probably wouldn't know it existed.

K&R

[AtheistCrusader]

14. More than any other leader? Perhaps. But not more than these guys.

Not 'awareness' per se, but a roadmap that might well lead to zero future cases of it.

http://www.independent.co.uk/news/science/exclusive-jawdropping-breakthrough-hailed-as-landmark-in-fight-against-hereditary-diseases-as-crispr-technique-heralds-genetic-revolution-8925295.html

You could be looking at the start of the cure for disorders like NF, and hundreds more.

[Vashta Nerada]

15. Will they be cured with compassion?

[ChazII]

16. Have you ever had someone tell you Halloween is over take off

the mask?

[AtheistCrusader]

18. No. Nor would it occur to me to treat another human that way.

I don't even let people get away with fat jokes against political monsters like Christie.
I judge people only by the content of their character.

If someone did that to another person in my presence, I would speak up. When people ask me for help, I do my best. When I encounter people who do not appear like me, I still extend them every courtesy. The nature of their character is the only thing that can change my disposition.


Part of my initial frustration with the original article was the way in which it was presented. I knew what that man's condition was. I knew it was genetic. That it was not 'boils'. That article was spun with propaganda that would resonate with certain people. It's a PR effort, and they are using that man as a prop, as best as I can tell. There are people in this country, right now, suffering blinding pain, with terminal illnesses, that feel the pain even on the best suppressants, even in their sleep. This pope would not just refuse to administer the last act of compassion that these people ask for, he would, and has, and does seek to make it illegal, so no other person can administer it either. There is no separating these issues. He may have done a wonderful thing, there in that moment, but during that same moment, all day, every day, his church leads a political fight to ensure other people, suffering as you cannot imagine, cannot humanely and safely end their suffering, whether they are catholic or not. I view that as a crime against humanity.

When I hear, 'what a compassionate man', I look to the content of his character, and I find him sorely lacking, however good that one act in that one moment may have been.

[ChazII]

20. Thank you for speaking up but for those with NF

This was not done with spin. Did you know that there are some fools in the medical profession who still think of this man as contagious? That he would be shunned in some countries and left to die?

It has been my experience that very little compassion is given to those who are physically different. They are called freaks and monsters and people have run screaming from them. They HAVE been DENIED jobs, access to public places like swimming pools and restaurants. They have been asked to leave places like swimming pools and restaurants for the way they look. NF is painful, the tumors both internal and external cause blinding pain and those who get the MPNST dx know that death is at their door.

I am not going to apologize for someone in the public spot light FINALLY showing it is okay to touch and acknowledge those who are different. When television, Hollywood and others are just as vocal about this issue as they are about the ones you cited then I might feel differently.

I believe that I understand, at least I hope I do, your pov. The Pope does represent an unbelievable evil in regards to the pedophiia. Maybe, just maybe when the LGBT are finally accepted and be able to marry whom ever they wish and when women are allowed to be priest, then those who are facially different and those who have tumors covering their bodies will finally be allowed equality. You undoubtedly know that neurofibromatosis does not discriminate even though humans unabashedly practice this barbaric behavior.

Edited to add: I have been a witness to these evens because they happened to my son. When he was in 2nd or 3rd grade an elderly couple asked me take my son out of the restaurant as his face made them lose their appetite. As a junior life guard patrons of the pool asked management to have my son leave the pool area because he was scaring their child/ren. Both times management spoke up on behalf of my son and politely told those lodging the complaint to "take a hike" and take the business elsewhere. This man and many like him and the they they are treated should also be viewed as a crime against humanity.

[AtheistCrusader]

25. I'm not sure what to say.

I'm horrified by what you experienced at the hands of those people. I can say this; sometimes people grow and learn. I can speak from experience. My father was a germ nut. Terrified of transmitted illness, and in his estimate, everything was transmissible. Wouldn't even let me swim in the YMCA pool during a field trip. Was afraid I'd catch something.

Being his son, I adopted, at least temporarily, many of his views. It wasn't too long before I shrugged off a great number of useless or counterproductive ideas he instilled in me. But during that time, if I had encountered a child with visible NF, I may have reacted inappropriately at the time.

You see, the idea, that actually IS catching. In this case, probably until high school biology 1. Ideas are socially transmissible. Some people don't learn until after they have acted, and reflected upon that action, or had it pointed out by another.


I don't expect you to apologize for the attention this pope has brought to NF. In fact, that's the one bright spot in this whole thing. (I do tend to question the church's motives/PR enveloping this issue) I wish you all the exposure this event can bring, for education, for awareness, all of that. There is nothing to apologize for.

[ChazII]

26. Facially privileged - AC, you're right I don't need to apologize.

Just as white privilege exists and male privilege exists, facial privilege also exists. Thank you for recognizing that there is nothing to apologize for.

Yes, people grow and learn and at different rates. There are many learning styles as well and as you pointed out some must actually experience and then reflect.

As for reacting inappropriately upon seeing a child or any individual with signs of NF, if a child is 3rd grade or older they need to be talked to about the inappropriate behavior. Look at it this way, would society tolerate anyone older than 8 years old screaming monster if the child saw a person of color?

Your father reminds me of Mr. Monk. Even adults need to be educated. There was a thread or two about a family who took their daughter who was also facially different. She had what appeared to be a rash and the family was treated very rudely by patron in the restaurant. Some DUers sided with the family while others said the patrons were correct in asking management to ask if the child was contagious. Point being - Just Ask. That last sentence is not directed to you personally, it is for anyone who has bothered to read this far.

First we do need to take care of our LGBT family and the rights of women to control their body. But maybe in the year 2525 (if man is still alive - an attempt at humor here) those who look like the Elephant Man (not NF), Reggie Bibbs (African American with NF -Google his name) and everyone else who has genetic disorders will have their rights, too.

AC, now I do apologize for this rant. I am just hoping one day a celebrity (besides Gillian Anderson) will speak up and let society know (or to use your words, point out) that tumors are not contagious.

[AtheistCrusader]

27. Humans are amazingly parallel processing machines.

I see no reason to stand in a linear line on rights. We're better than dealing at one item at a time sequentially. (I realize you are making a point though, and a good one.)

If a 3rd grader did something like that, yes, I would point it out to the child, but I'd be looking at the parents too, because that's ultimately where the responsibility lies.



I can't remember the name of that song...

Edit: This talk covered some of the influence we have to teach children how to discover and view new things.
http://www.ted.com/talks/aimee_mullins_prosthetic_aesthetics.html

[LanternWaste]

24. No more and no less than they will be cured by awareness.

No more and no less than they will be cured by awareness.

[ChazII]

17. African-American and facially disfigured

We have all heard about driving while black.

Imagine what happens to any individual who breathes while being facially different.

http://www.reggiebibbs.com/

http://justaskfoundation.org/


You can also check his FB page

[kydo]

19. I got involved in 1996

Here is my story:

I was a huge x-files fan and I had started working with a wonderful friend from Canada, (I was and still am in the Orlando Fl area) on a Gillian Anderson website. This site was just a fan site but it eventually became her official website. In the beginning people would want to send her gifts for her birthday etc. And I came up with this idea after reading an interview where she talked about all the gifts and how she would rather people donated to NF. Her mother ran a NF support group in Michigan. Gillian's younger brother had NF.

Anyway the idea was to have an online auction during May which is National NF Awareness Month. (created a teal colored ribbon) The first year x-files fan donated items and we auctioned them online. This was before e-bay. This was the first of its kind. It raised $7,000 that first year.

Not long after that Gillian's mom called me and we started working together on many things. For the next auction her mom got Gillian to donate a few things and we raised $21,000. By this time Gillian caught on and really started donating stuff and for the 3rd year we raised $98,000.

She would donate stuff like a visit to the x-files set. Or tickets the wrap party. Signed scripts, x-files props. It was crazy. In the end this auction raised about $678.000 and a lot of people became aware of NF.

Gillian was a real trooper when it came to NF. Sadly her brother passed away a couple of years ago. He was 30, and passed due to a tumor in the brain. But Gillian and her mom are still active in NF.

[ChazII]

21. Kydo, how lucky you are in meeting

the Anderson family. While I have not met them I can tell you that they are loved and respected by many in the NF community. Gillian was one of the first, if not the first, in the entertainment industry to step up to the plate and help educate the public about Neurofibromatosis.

Celebrities do not need to be vocal and shout about NF to get the public's attention. Gillian did it in a simple dignified manner as you describe by the donations in your third and fourth paragraph.

When Gillian's brother passed threads dedicated to his family were started on several different forums to let the Andersons know just how much they mean to us.

Again, thank you.

[kydo]

22. Extremely lucky

Rosemary Anderson is one cool person! Just an awesome lady.

All the people I meet in the NF Community were great! Mary Ann Wilson from Neurofibromatosis, Inc.-Mid-Atlantic was the absolute best, I can not over state how marvelous this woman is. I worked with her a lot.

And I should be thanking you, you do more than I ever did for NF. You are dealing with it on a daily basis. People like you are what makes all this work!