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Sun Nov 10, 2013, 01:30 PM

Is it okay to shun the disfigured? (Warning it talks about the Pope)

http://www.usatoday.com/story/news/nation/2013/11/07/pope-disfigured-neurofibromatosis/3465187/

As one who has this genetic disease and who has been shunned I like this gentleman. My son has been asked to leave restaurants as his appearance caused patrons to lose their appetite. At public pools people with NF have been asked to leave because the other swimmers are afraid of both the looks and the fear of 'catching' what ever the NF person has.

Oh, not to mention the fact that we should not be allowed to have children. Or even better that if we did not have children then NF would just disappear. Would DU tolerate this attitude? Dumb question but not a rhetorical one. If President Obama had hugged and kissed this man's head would it be label as a photo op or one of understanding and compassion?

I realize in the scheme of things there are other groups that have issues far more important than those with NF, but since this disorder may and often does kill ... well a friend who recently posted on a message board says it best:

I just found out that a member of my NF family passed away from a brain tumor. Kyle was 22 .......I HATE NF.....for all the pain it creates, the chronic pain and migraines that I suffer from......from the pain it causes children. An adult can handle the pain, but a child????? A child who may be different because of NF, which causes trouble with learning and comprehending what they have learned.....to the teasing it causes a child with NF.......just b/c they learn differently, look differently.....some people even have the audacity (sp?) to tease an adult becuase of tumors (bumps) on their faces.........sorry for the rant....

With that, I also end this rant and step off my soapbox. Thank you for understanding the pain that my community is experiencing.

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Response to ChazII (Original post)

Sun Nov 10, 2013, 02:03 PM

1. thank you for this thread...

 

I had to google the disease to learn about it. It turns out that I attended a class with a women about 4 decades ago with Type 1 of NF.

First, I am so sorry for what you have and continue to suffer

Just as nobody has a right for prevent abortion, nobody has a right to prevent parents from becoming parents. I think being a carrier of any genetic disorder is an issue that would cause people to think hard about becoming parents. Its not so very different from wondering if you can provide for children, will be there for the longer haul (eg initially Christopher and Dana Reeve were going to have another child in spite of his paralysis, but they later decided against it), etc. Knowing what you know, do you want to subject your children to the same, etc. But in the end, it is the individual's choice, or should be.

People will always have their own opinions; its the ones who think we all need to hear their opinions that are the problem.

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Response to magical thyme (Reply #1)

Sun Nov 10, 2013, 03:08 PM

5. Excellent question

but because one parent has very visible does not mean their child will be. This is a very hot bed and has caused numerous arguments even in our own community.

My former husband could not handle having a disfigured child and left us when my son was 4 months old. I made the decision not to remarry and to not have a child for the very reason you mentioned. I did not want another child called freak or monster baby while at the stroller age and worse during the elementary years.

This explains the genetic aspect better than I am able to.

http://en.wikipedia.org/wiki/Neurofibromatosis


Neurofibromatosis (NF) refers to a number of inherited conditions that are clinically and genetically distinct and carry a high risk of tumor formation, particularly in the brain.[1] Neurofibromatosis is an autosomal dominant disorder, which means only one copy of the affected gene is needed for the disorder to develop. Therefore, if only one parent has neurofibromatosis, his or her children have a 50% chance of developing the condition as well (it is rarely the case that one person has the mutated gene twice, which would imply a 100% chance of their children developing NF). The severity in affected individuals can vary; this may be due to variable expressivity. Approximately half of cases are due to de novo mutations and no other affected family members are seen. It affects males and females equally. In addition, some individuals may have mosaic NF, in which some but not all cells of the body carry the mutation. The neurofibromatoses are as follows:

Neurofibromatosis type I, in which the nerve tissue grows tumors (neurofibromas) that may be benign and may cause serious damage by compressing nerves and other tissues.

Neurofibromatosis type II, in which bilateral acoustic neuromas (tumors of the vestibulocochlear nerve or cranial nerve 8 (CN VIII) also known as schwannoma) develop, often leading to hearing loss.

Schwannomatosis, in which painful schwannomas develop on cranial, spinal and peripheral nerves.


NF2 also cause facial paralysis when surgery is done to try and prevent hearing loss. In the past 5 years three of my friends died because of NF2 and they all were 'disfigured.'

If I am a problem than that is the reader's opinion. DU would not tolerate the same treatment of other groups in our community. That is why I posted. If I am misunderstanding your words I apologize but I will not apologize for speaking up for the facially different.

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Response to ChazII (Reply #5)

Sun Nov 10, 2013, 05:53 PM

7. aaack! that is not at all what I meant by my last statement...

 

I'm so sorry. I certainly did not intend to imply you were a problem for stating your opinion.

I was referring back to your statement about people who have some need to tell somebody else that they should not, in their personal opinion, be allowed to have children or, again in their opinion, should choose not to have children. That is a highly personal decision, and one which only the person or people in question can decide.

I've literally had total strangers walk up to me and accuse me of being selfish for *not* being married and having children. It's just none of their damn business.

Certainly in a forum such as DU, or in social situations where people are having discussions, then everybody should feel free to express their opinions.

It's the people who think they have a right to push their opinions on others who are minding their own business that I was thinking of.

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Response to magical thyme (Reply #7)

Sun Nov 10, 2013, 06:51 PM

8. Wow! Talk about how sometimes we

can miscommunicate our ideas. Magical time, thank you for explanation. I am misunderstanding.

It would be fun to have coffee (beer?) together and have that not so perfect stranger come and tell us we are selfish. You for not having children and me for having the one. Between the two of us we could do a great job of giving them an education.

for your understanding.

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Response to ChazII (Original post)

Sun Nov 10, 2013, 02:10 PM

2. Absolutely not.

 

Not only should they not be shunned, they should be welcomed with understanding. I daresay people know a lot more about this disease now than they did a few days ago.

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Response to ChazII (Original post)

Sun Nov 10, 2013, 02:55 PM

3. Thanks for your courage in telling us about your life and your family. I don't have NF, but it's

another of the living hells many people live with daily. This is not about the messenger but the more important message.

I live in a gay friendly state that protects a woman's right to choice, worker rights and many other civil liberties. Certainly not perfect, but for me the vision of the Democratic Party is inclusion, not purity or exclusion.

I see posters here on DU who make posts I despise; but they make others that make me understand they are not heartless and have their reasons. The variety of experience and talent here is stunning.

I live in an area in which we have all kinds of disabled people so that nothing is unusual. We have vets who have lost most of their face, and others who from birth have defects. Yet they are loved and rspected.

We have other young vets confined to wheelchairs that they control with a straw to move. The side walks, apartments and places of business are all disabled access. Many of our citizens work with the disabled, from schools to other situations.

This is an area where an intellectually challenged person is not shunned or mocked, welcomed in restaurants, literally, no matter how they look, how many times food misses their mouths or make odd noises.

It is part of the community the author of a book of the president's devotionals described him. I read part of and made a post of it:

DuBois is a young minister who has been interviewed on television and is quoted in the NY Times. He felt Obama had grasped the spirit of Christ and a spirit filled life based on his teachings. I'd say it means Obama has grasped the true heart and not the outside of religion as the right waves around to make themselves into authority figures The writer said what drew him to Obama and gives anecdotes.

He heard him speaking in 2004, IIRC, and not making an official speech, but talking to several people about public service. He said he used the words from the hymn, 'Our God is An Awesome God' which is a joyful, triumphant song and talked about 'the God of the blue states' as being strong as shown by the love toward all of its citizens. That's what I love about living here and being a Democrat.


http://www.democraticunderground.com/110217474#op

I look at religion in general with a jaundiced eye but cannot deny the fact that individuals of these faiths who believe in love and acceptance in some areas are indeed life savers. I do not delve with them on controversial subjects. Those who are loud and contentious and insist I agree with them, never do the kind of work I am talking about to help others. So I shun them.

That is who the enemy of humanity is, those who want to control others. Keep the church in check, maintain the power of the secular and needed resources to protect our nation from theocracy is my policy.

But when one is in dire straits or helping those who are there, you can't be picky. I've been shown grace by the weak and unpopular but also by the strong and powerful at times in my life. We all need some help at some time in our life, as children or elders, or for some, all the time in between.

It's normal. You and your family are normal, and examples of life. All will come to suffer and die, there's no escape.

I'm sorry for the ignorance and cruelty you and yours have suffered and have seen a great deal of it in my life. Just know that many of us on DU care and respect you and yours.


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Response to ChazII (Original post)

Sun Nov 10, 2013, 03:02 PM

4. Of course not, that is cruelty.

 

Do you think it is alright for Francis to say gay people should not have families or rights?

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Response to Bluenorthwest (Reply #4)

Mon Nov 11, 2013, 10:54 PM

12. Are you aware that Pope Francis is having questionnaires sent to laypeople

all over the world asking how people think the Church should serve gay people?

And that he has said some things in support of civil unions?

Of course he's not for marriage equality (yet) but he seems light years away from any other Pope.

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Response to ChazII (Original post)

Sun Nov 10, 2013, 03:11 PM

6. Disfigured people should never be shunned.

 

If Obama were in the picture instead of Franny, it would still have been just a photo op.

My point for the last three days has been this: why is it alright for Democrats to say a guy is is when he thinks LGBT people are a "destructive work on God's plan"?

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Response to ChazII (Original post)

Sun Nov 10, 2013, 07:33 PM

9. 50% of those with NF are the first ones in their family to have it.

Half of the cases of NF result from a spontaneous mutation in the genes and the other half is an inherited condition. My adopted daughter has NF1. She has multiple plexiform tumors deep inside and along her spine. She has no outward signs of NF but the deep internal plexiforms are dangerous and can turn cancerous rather quickly.

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Response to kiranon (Reply #9)

Sun Nov 10, 2013, 11:37 PM

10. Kiranon, your daughter is a heroine and a fighter

No one here except for the others will understand about plexis and the harm they can do.

The uninformed wonder why the doctors don't just go in an scoop the tumor out. Or worse they continue to ask why don't the doctors do something even when they know multiple surgeries have been performed.

People seemed to be shocked to learn that there is no cure. One of my friend's passed away when her plexi became cancerous. It was located at the base of her neck. She had surgery to have most of it removed and you can probably guess the rest. The benign tumor that was left in her body is what turned cancerous and she was dx with MPNST and died within 3 months.

Another friend in GA has a son whose tumors are like you describe. He is now 23 years old and continues to be monitored by a team of doctors. His tumors have stopped growing for now. May your daughter's tumor stop growing and always remain benign.

Have you had any opportunities to meet others with NF1 or NF2? There are support groups on FaceBook if you are a member. Some are by state, others by region and then just regular groups such as NF Moms Rock.

Thank for letting others know about the spontaneous mutation. My son and I are proud to be mutants because of the way the X-Men let others via comics that it is okay to be born this way.

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Response to ChazII (Reply #10)

Tue Nov 12, 2013, 01:09 AM

17. Thank you for your reply.

We go to a support group that meets at Stanford. Am so afraid she will get MPNST. She has MRIs 1 to 2x a year depending on symptoms. She has to be brave and a fighter and she is. Am amazed by her strength.

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Response to ChazII (Original post)

Mon Nov 11, 2013, 10:48 PM

11. I am so glad you spoke up

and made people face the humanity of that photo. All the cynics here couldn't take away from the fact that what happened was clearly very meaningful to that man, who wouldn't have been there if he wasn't Catholic or at least open to an approach by the Pope.

And I believe this Pope was completely sincere. It fits with everything he's been trying to do since he came into office.

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Response to pnwmom (Reply #11)

Tue Nov 12, 2013, 12:26 AM

14. pnwmom, thank you for understanding.

It is indeed easy to fall into cynicism. The Pope openly hugging that man and kissing his head was meaningful. I agree with you that it does make people face the humanity of the photo.

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Response to ChazII (Reply #14)

Tue Nov 12, 2013, 12:46 AM

16. I knew what that man's condition was the second I saw the picture.

A lot of us got educated when we saw The Elephant Man (even though I understand now he might have had a different variant of the disease).

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Response to ChazII (Original post)

Mon Nov 11, 2013, 11:25 PM

13. We share a similar blessing and curse.

My daughter has a rare disease - and we have an extraordinarily close "family" of others living with the disease. In the last 45 days, we have lost two of the most prominent members of the group to the disease, and another three who were more peripheral but still loved.

The group is wonderful, in that whenever any of us needs a pick-me-up, or is going through a rough patch the rest of the "family" is instantly there. The down side is that being instantly there means that each of us also is constantly drawn into the depths of the diseases lair on a regular basis.

Glad you've found a family that knows exactly what you experience, even if what comes with that is more exposure to the hardest parts of the disease than is really comfortable.

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Response to Ms. Toad (Reply #13)

Tue Nov 12, 2013, 12:30 AM

15. A blessing and a curse

is a great way to describe what many people experience. The 'family' is indeed there one another and with the internet the 'family' is from all over the planet. Death is always close but knowing that we have friends that have truly walked in our shoes brings comfort.

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Response to ChazII (Original post)

Tue Nov 12, 2013, 12:28 PM

18. online is one place where people judge more on what's going on in your head than on your skin

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