VHL on Facebook and Myspace

Hi everyone,

To start off, let me introduce myself; I am a junior in college, and six years ago, my mother and sister were diagnosed with VHL. Since my family found out about VHL, I have committed myself to spreading awareness, which is such a powerful tool for our community. I personally believe that by educating other people about VHL, we increase its visibility and come closer to a cure.

Halfway through my freshmen year, I started a group on the popular social networking website, Facebook.com, called "Spreading Awareness of Von Hippel-Lindau Disease (VHL)." My goal was to spread awareness of VHL on Facebook; I invited my friends on Facebook, and I even got some of them to invite their friends. Almost two years later, the group now has 724 members and seems to have been steadily growing. I also created a version of the group for another popular social networking website, Myspace.com. It does not have nearly as many members, but I am hoping this will change.

I am asking for your help in my online awareness cause; if you are (or if you want to be) a member of Facebook or Myspace, please join my awareness group, and invite your friends to join, too! To find the group on Facebook, just do a search for "Spreading Awareness of Von Hippel-Lindau disease (VHL)." The corresponding group on Myspace can be found at http://groups.myspace.com/vhlawareness. VHL Awareness even has its own friend page on Myspace at www.myspace.com/vhlawareness.

Websites like Facebook and Myspace offer us a powerful tool that we can use to network with other people and broaden the VHL community. I thank everyone for their consideration in joining my group, and I thank you for all your help in spreading awareness of VHL!

-Ariel :)

By Beth
Posted October 24, 2008 at 11:54 am
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Hi Ariel,

On the homepage of the VHLFA group, you'll find links to badges that you can use on your MySpace and Facebook pages to link back to this community. I hope you'll consider using them!

Beth, TeamInspire

By Ariel
Posted October 24, 2008 at 10:30 pm
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I am very glad and grateful to have the opportunity to help.

Beth, in regards to the badges, I do not think I can embed HTML on the Myspace and Facebook group pages, but I do link to vhl.inspire.com on Facebook, and I will add a link on Myspace. Thanks for your help!

By Chiquilla_336
Posted October 25, 2008 at 6:10 pm
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Hi Ariel,
My name is Giselle im a vhl patient, what you'd done its amazing, people really need to be aware about this disease; thank you so much for had taken your time and do all this.
Giselle

By Ariel
Posted October 25, 2008 at 10:11 pm
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Hi Giselle,
Thank you for your kind words; I am very glad to have the opportunity to help out and spread the word about VHL.

This should link to the group on Facebook, in case anyone is having trouble finding it:
http://www.facebook.com/group.php?gid=2238187984&ref=ts

-Ariel

By ALB
Posted October 27, 2008 at 8:36 am
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Hi Ariel--

Boy has this slipped through the cracks on me. I'm still on myspace but not facebook. Write me off the group to let me knpw if you'd still like my assistance with any of this and I'll ump in immediately.

Best,
Amy

By Beth
Posted October 27, 2008 at 9:52 am
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Hi Ariel!

How to use the bages on Facebook, MySpace and several email clients is here:
http://www.inspire.com/groups/vhl-family-alliance/badges/

Hope this helps!
Beth

By Ariel
Posted August 19, 2009 at 9:08 pm
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Hi Everyone!

I just want to let you all know that the Facebook group now has 1,743 members!

I want to send a big thank you to everyone who has joined the Facebook group and helped made this happen. Also, thank you for inviting your friends to join. With everyone's help, we have worked together to raise awareness and circulate knowledge of VHL. Thank you!

Recently, the name of the group was changed from "Spreading Awareness of Von Hippel-Lindau Disease (VHL)" to "VHL: Spreading Awareness of von Hippel-Lindau." Hopefully, the name change has made the group easier to search for on the Internet!

If you have lost the link to the group, here it is:
http://www.facebook.com/group.php?gid=2238187984&ref=ts

Again, thank you for everybody's help. Much health and happiness to all of you!

Best,
Ariel

By Jennifer09
Posted August 23, 2009 at 10:45 pm
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Hi Ariel
It's great that you are being so pro-active, in spreading the word. Thanks. I read your article in the last newsletter - yours is a story very similar to mine - in that one family member is diagnosed - and thank God for the doctor who spotted the tumour on Shelby's eye and requested further testing - and then another is diagnosed. In my case 3 of us were diagnosed within 2-3 yrs. at a time when very little was known about vhl - anywhere in the world. There's a lot to take in and a lot of adjusting to do. Your mum (Australian spelling!) is welcome to write if she ever wants to or Shelby for that matter. I'm a firn believer that developing a Positive Mental Attitude, acquiring knowledge which gives you personal power (even though scary at times), being forwarned (when possible) is forearmed are very useful qualities (among many others) to develop.

Is it a foregone conclusion that Shelby will have to have her eye removed? I'll explain why this thought has occured to me. I had mine removed as I became photphobic i.e.highly sensitive to light, 10yrs, after losing my sight in that eye and my brother who lost his sight, didn't. Anyway, I only hope this helps, I don't want to upset anyone.

Keep up that great work Ariel.
Jennifer09

By Ariel
Posted August 24, 2009 at 9:56 am
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Hi Jennifer,

Thank you so much, and thank you for reading my article in the newsletter!

I appreciate you sharing some of your story with me. I very much agree with your advice; positive mental attitude, knowledge, and close monitoring have made it much easier for my family to deal with the VHL diagnosis. Yes, it can be scary, but having a good support system makes it easier to deal with that fear.

Unfortunately, it is a foregone conclusion that Shelby will eventually need her eye removed, but we do not know when this will occur. She goes to the eye doctor regularly to check vision in her right eye (which still has vision..20-10!!) and to monitor the regression in her left eye (in which she is blind). For several years now, everything has been stable in both eyes. The concern is that eventually, as the left eye continues to regress, it will become very painful. I am not sure about the details of how it will become painful. This might not occur for many years down the road. So, we all try to stay hopeful and cherish the time between doctors' visits!

Thanks again, Jennifer!

Ariel

By joyceg98
Posted August 24, 2009 at 1:00 pm
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The pain comes as the pressure in the eye increases. There's no set schedule for it, it depends how much nourishment the eye is getting. Once the retina is detached, the eye is not getting nourished and begins to deteriorate. If the retina is still partially attached, the deterioration may take longer.

She will know when it's time. Until then, no need to worry about it.

Best wishes,
Joyce

By njwoods
Posted August 25, 2009 at 5:50 pm
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I found your Facebook page quite easily. I think it is a great way to put the word in the streets. I know that from most everyone I have talked to know nothing of VHL. If you have been denied or delayed or received.....insurance bad faith

Welcome to Inspire!

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