Google: Groups: Facial Difference: http://groups.google.com/group/facialdifference

Click on the link above and try to join from that page. If you have a Google GMail account, you will need to join with that account. If you do not, you would need to either use a Google account that does not have GMail or create a Google account based on another email address. I hope this works. Good luck, all!

There are many lists and groups for persons with a specific type of facial difference concern, but there does not seem to be a single place to bring together the discussions that are common to all of us. Let's Face It, as a site concerned with providing information and support across the spectrum of facial difference concerns and communities, is exploring the idea of using online social networking tools to address this gap.

We have created broad social spaces in a variety of online social environments. We don't know which of these (if any) will be most useful to the facial difference community. We hope that some part of this will prove to be useful. We thought it was worth trying. Here are some of the online social spaces. Please feel free to join us, and pass the word along to your friends.

"Let's Face It is here to provide information and facilitate connections and support for the broader facial difference community. By the broad community we mean individuals who have facial difference, or their friends or family. We mean any kind of facial difference -- cleft lip or other birth anomalies; as a result of trauma, injury, violence or burns; or resulting from cancer. We mean any kind of facial difference -- mouth, jaws, skull, nose, eyes, ears, skin, or other. There are many common concerns shared by anyone with facial difference -- let's come together here to help everyone with facial difference."

Google Groups: Facial Difference email group: http://www.google.com/groups/facialdifference/

Second Life Group "Let's Face It".
NOTE: Application for Second Life can be downloaded from http://secondlife.com. Personal avatar must be created to join group.

Ning: Facial Difference: http://facialdifference.ning.com/

Facebook: Let's Face It: http://groups.to/letsfaceit/ or http://www.facebook.com/group.php?gid=14635254465

Other Ning networks of possible interest:

- Epidermolysis Bullosa Awareness & News: http://ebnews.ning.com/

Other Facebook groups of possible interest:
- AboutFace
- All The Cool Kids Have Cleft Lip And Palate
- Alliance For Smiles Team Members
- Apert syndrome awareness
- Awareness of cleft lip and palate
- Behcets Disease Awareness
- The Birth Defect Appreciation Society
- Cleft Gang
- Cleft Lip & Palate Association of Ireland
- Cleft Lip & Palate Surgery for Kids in Need
- Cleft Lip and Palate
- Cranio Connect Ontario - Craniosynostosis
- Crouzon Syndrome
- Darren Agnew Cleft Pallet Society [sic]
- Deformed Orphans Relief Association of Yingshan County, Anhui, China
- Donations for CLAPA (Cleft Lip and Palate Association)
- Ectodermal Dysplasia
- Edmonton Cleft Lip & Palate Support Network
- Facing the World
- FDU Students for Operation Smile
- February 29th is Rare Disease Day
- Find A Cure for Epidermolysis Bullosa
- Friend of Interplast.Org
- Future Plastic Surgeons of America
- god's gifted children-apert and down syndrome
- Help Us Stop Sticklers Syndrome
- I love someone born with a cleft.(Lip or Palette) [sic]
- Join the cause: Help Us, Help Kids
- The Jorge Posada Foundation
- Kelleigh Gustafson Vascular Anomaly Awareness and Advocacy for Research
- Melrose High Operation Smile :o)
- One Charity. One Problem. One Goal. Smile Train.
- Operation Smile
- OPERATION SMILE =D
- Operation Smile ASFG
- Operation Smile HVHS!
- Operation Smile Ohio State Chapter
- Our Journey, Cleft Lip and Palate
- Parents of children with cleft lip or palete [sic]
- Pediatric Cranial Synostosis
- Pierre Robin Sequence
- Plagiocephaly Support Group
- Progeria
- Robinow Syndrome
- Rxcipes for Smiles - Charity Cookbook
- Saving the World One Smile at a Time (GO SMILE TRAIN!!)
- Smile Campaign
- SmileTrain
- TheSmileTrain.Org
- Smile Train
- The Smile Train: The World's Leading Cleft Charity
- Summit for Smiles
- Tiana's One smile page
- Stand Up and Smile
- Support for families of Cleft lip/ Palate childern in Ontario
- Supporting families who have children with Cleft Lip/Pallet [sic]
- Teens with a cleft lip/palate
- Tribute to Rare Diseases That People Know Too Little About
- Tuberous Sclerosis
- Velo Cardio Facial Syndrome
- We Love Our Cranio Babies!

... and more.

Katherine McLane, Lance Armstrong Foundation
512-279-8384
Katherine-dot-McLane at-sign livestrong-dot-org

Local Organizations Share Information on Livestrong Day in Delaware
Wilmington,DE - On Tuesday May 13, 2008, local Lance Armstrong Foundation Delegates invite you to share your cancer resources and information.

Join us from 11:30-1:30 in Rodney Square, Wilmington Delaware. Help build support and awareness by helping people with their goals to Livestrong.

The event includes a lunchtime concert from local band CODE BLUE.

The event is free and open to the public. All cancer organizations and services are invited to provide free information and support. Please turn up your computer volume and click the link below to more about the event.

If you have not already emailed your plans to attend, please let us know today. The event is informal. No tables or equipment is provided. However you are welcome to bring your own set-up and materials. The weather forecast for Tuesday is 62-67 degrees and Sunny!
RSVP to info at-sign can-connect.org.

What are the experiences of students with hearing loss attending regular schools? This book tells a story of a fictional young student through pictures and his experiences using a cochlear implant.

http://www.trafford.com/robots/03-0677.html

Gabe and Izzy: http://gabeandizzy.com/

Gabe and Izzy are a woman and her dog who both share the same degenerative neuromuscular disease - Friedreich’s ataxia. Gabe is a local Michigan woman but speaks against bullying at schools across the country.

In her presentation she mentioned this song, which really got to my son (who is now memorizing it):

Mark Wills: Don't Laugh at Me: http://www.youtube.com/watch?v=n3_JvChXL7o

Peter, Paul and Mary: Don't Laugh at Me: http://www.youtube.com/watch?v=vbBWsscli_4

Those lead to some other resources on this topic that might be interest.

Teaching difference and acceptance in school activities and projects:

Apple Learning Interchange: Don't Laugh at Me: http://edcommunity.apple.com/ali/story.php?itemID=189

Learning is Messy: http://www.learningismessy.com/PublicService.htm

Flickr: Stop Bullying: http://flickr.com/groups/stopbullying/pool/

Operation Respect: http://www.dontlaugh.org/

Operation Respect CT: http://www.operationrespectct.org/index.html

"This is a multi-media curriculum, which concentrates on recognizing intolerance, increasing acceptance and enhancing sensitivity to students' emotional needs."

This is a wonderful book.

What I have done here, is pull out just a very few of my favorite lines from the book, to let the book speak for itself. I tried very hard to restrain myself, and reserved some of my favorites so that you can discover more wonderful jewels of wit and wisdom when you read the book. This is just a tiny bit of flavor to tantalize you. Please, GO, read this book.

QUOTATIONS & EXCERPTS

'Miracles Not Accepted Here', p. 19
Many time one run, even one successful swing of the bat, would have been sufficient to convince me of the reality of miracles. Apparently, neither normality nor homeruns were possible in my life. Most hideous of all, it seemed God wore a Yankee uniform.

'Random Acts of Cruelty', p. 44
Because that place of fear is where predators and manipulators of all sorts -- sexual, financial, religious, political, warmongering -- come to feed. And that is where cruelty is born -- in fear of not being acceptable, worthy, valued and loved.

'Random Acts of Cruelty', p. 44
I know now that when people turn away, they're not turning away from my face, but from themselves, from their own fears. When they meet me in the light of day, all their fears are pushed onto me in a millisecond. And that's my job, to carry the weight of that fear for them, to carry it so we can all pretend we are normal, if just for a little bit.

'The Priciple of Delayed Understanding', p. 51
Don't worry about not knowing the answer immediately. Don't confuse yourself with Google. For that matter, remember that Google does not know the right answer either; it just spits out information quickly.

'The Basic Motivating Factor', p. 61
Psychologists tell us that the number one fear of all Americans is the fear of public speaking. The fear of death is number 6. (Which is probably why capital punishment does not work too well.)

'The Basic Motivating Factor', p. 68
And there was God. Not God up in the sky, no bearded old alcoholic bipolar man with a rigid smile on his face and a club behind his back. Only community, the feeling of mutual supprt and being in it togehter and the first great glimpse of what my life could be.

'Life as the Mirror', p. 79
My face is an elaborately disguised gift from God. Oh, not a gift I was ecstatic about receiving. Did I open this gift and say, "Ah ... ah! How did you know this is what I wanted, God?" No, it wa smore like, "You shouldn't have."

'Prayer', p. 91
Prayer is not a planned thing. Prayer emerges of its own accord. You are not supposed to play. You are supposed to get out of the way of the prayer that prays itself.

'Prayer', p. 93
God is not fooled by teeth whitener or Botox.

'The Laying On of Hands', p. 99
There are five ways people give and receive love: spending quality time, offering service, giving compliments, giving gifts, and touching.

'The Laying On of Hands', p. 110
I was sitting in the Planetree Library at California Pacific Medical Center, studying anatomy. One of the librarians came up to me as I bent over my books. She said, "I thought you might be interested in this," and set in front of me a booklet entitled The Let's Face It Resource Guide for People With Facial Difference. She quickly walked away. I was angry and embarassed. I brought the booklet home and showed it to Marlena. I told her, "I want nothing to do with this."
[NOTE: David did contact Let's Face It and became a friend of Betsy's. In case you couldn't guess the outcome. :) ]

'Unconditional Love Has Its Conditions', p. 116
The true composition of love: 20 percent feelings, 80 percent action.

'Unconditional Love Has Its Conditions', p. 125
Dr. Christopher Dowd, who performed sclerotherpy on my throat and soft palate and tongue. Before the procedure he talked with me for almost two hours in his office.

'Pitiless', p. 131
Children, however, don't waste too much time on pity. Once they get over any shyness, they get right to the point:
"You are smiling too much."
"What happened to your mouth?"
"What happened to your chin?"
"Where did your chin go?"
What is that stuff on the side of your face?"
"Why is your eye too big?"
"Does your face hurt?"

'Pitiless', p. 134
People do stare. People do ask what happened to my face. Sometimes I'm grouchy. I feel like saying: "You've heard of a bad hair day. Well, I am having a bad face day."

'Pitiless', p. 137
I squatted down in front of Derek. "Derek, were you wondering what happened to my face?" He nodded. "Well, you know that everyone looks different. And this is just the way I look. My face doesn't hurt. I look different, but I am just a regular person. My name is David."

You should be noticing more blog activity, more activity on our del.icio.us account, signs of these being integrated more fully with the web site. In addition, we will be expanding the variety of social media used in the site.

For starters, the video of Betsy speaking here is now available in Google Video. I hope this makes it easier for people to view. I just watched it again myself, and am impressed all over again by Betsy's dynamism as a speaker and a person. I hope you enjoy watching this as much as I have, and find it easier to share with your friends and families.

A:
This question was unusual in that it concerned a common condition, a not unusual type of benign growth, and that there does not seem to be many patient support groups related to the condition. Normally, we like to offer both consumer health and professional information about a condition, as well as helping people find other "real folk" who have some experience or concern related to the condition. For this topic, there was little quality consumer health information, so we are sharing mostly information for doctors, hoping that this will be helpful.

TERMS:
cholesterol granuloma
This is also known as or distinguished from: cholesteatoma, petrous apicitis, Gradenigo syndrome, Gradenigo's syndrome, giant cholesterol cyst of petrous apex, cholesterol granuloma of petrous apex, petrous apex schwannoma, clivus chordoma, clivus chondrosarcoma, as well as other names and conditions.

SEARCHING:
Here is a sample search for more information performed both in Pubmed (for articles for doctors) and Google (which also brough back mostly articles for doctors).

(cholesterol granuloma OR cholesteatoma) (head OR cranial OR cranium OR facial OR face OR aural OR auditory OR ear) "differential diagnosis"

Pubmed: http://tinyurl.com/3xjyn9

Google: http://tinyurl.com/2tcqa8

CONSUMER HEALTH INFORMATION:

American Academy of Otolaryngology-Head and Neck Surgery (AAOHNS): Cholesteatoma: http://www.entnet.org/healthinfo/ears/cholesteatoma.cfm

EarSite: Tumors: Cholesteatoma: http://www.earsite.com/tumors/cholesteatoma.html

MedlinePlus: Medical Encyclopedia: Cholesteatoma: http://www.nlm.nih.gov/medlineplus/ency/article/001050.htm

SUPPORT GROUPS / PATIENT FORUMS:

Cholesteatoma.net: http://www.cholesteatoma.net/

LINKS FOR HEALTHCARE PROFESSIONALS:

eMedicine: Cholesteatoma: http://www.emedicine.com/PED/topic384.htm

eMedicine: Middle Ear, Cholesteatoma: http://www.emedicine.com/ENT/topic220.htm

eMedicine: Skull Base, Petrous Apex, Infection: http://www.emedicine.com/ent/topic243.htm

eMedicine: Skull Base, Petrous Apex, Tumors: http://www.emedicine.com/ENT/topic244.htm

February 27th became noted as a date in honor of anti-bullying initiatives in Canada and has spread through the social media. There are hundreds of blog postings, a Flickr group, a Facebook group, social news reports, and more - even a YouTube video.

Christi Clark: Wear Pink: http://www.wearpink.ca/

Facebook: Events: I Will Wear Something Pink on February 27th & Take a Stand Against Bullying: http://www.facebook.com/event.php?eid=21151549152

Facebook: Groups: Wear a Pink T-shirt on February 27th and Take a Stand Against Bullying: http://www.facebook.com/group.php?gid=22281224208

Flickr: Groups: Stop Bullying: http://www.flickr.com/groups/stopbullying/

NowPublic: Today is anti-bullying day - so wear some pink and get involved: http://www.nowpublic.com/culture/today-anti-bullying-day-so-wear-some-pink-and-get-involved

February 29th is International Rare Disease Day. It was founded by EuroDis and promoted by Denise Silber in Paris. The day's events and activities focus on promoting awareness of rare diseases and the concerns and issues related to them.

"Because we constantly need to raise awareness on rare diseases among decisions makers, health professionals and the general public. Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals ... Because we need to keep fighting for rare disease patients ... "

There is still time to join the Facebook group and show your support. Think about it, will you?

Eurodis: Rare Disease Day: http://www.rarediseaseday.org/

Facebook: Group: Feb 29th is Rare Disease Day: http://www.facebook.com/group.php?gid=8392774023