Community Support for All Rare Diseases, Conditions or Disorders like Syringomyelia, Chiari, EDS, Epilepsy & more. #rarediseasematter

A place to Share, Learn & Support!

Subscriber & Help Build Our Community!

Subscribe to our Network, and help build our community support. Membership to our Network is always FREE, but the cost to maintain the network is not, which is why we are asking members to become Subscribers for the small contribution of $20 / year. You are helping our team provide educational information, helpful resources, and provide support for those affected by Syringomyelia, Chiari Malformation & other Rare Diseases or Disorders around the world, Subscription Includes:

  • Wristbands (2)
  • Brochure
  • Thank you letter
  • 1 Year Subscription
  • Past Support Group Meeting Recording (Access) 
  • Subscriber Banner on Profile Picture
  • Network Membership Access
  • Network Chat Room Access
  • Online Support Group Meeting Access

Its the responsibility of our subscribers to take the initiatives to be apart of the Chat Room or Online Support Group Meetings. Thank you for your support!

Awareness Wristbands

Help support our Network & its innitiatives by purchasing and wearing our Syringomyelia & Chiari Malformation Awareness Wristbands: Blue and Purple. Order Now!

         

Syringomyelia & Chiari Wristband
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Videos:

Town of Ajax Ajax Civic Award (Adult) 2014 winner Carion Fenn.

Spinal Cord Injury (Ontario) & University Health Network (UHN) Patti Dawson Award. 

Abilities Awards: Advocacy Award 2014

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Rogers TV: Talk Durham Interviews

Debra Hutchison (Host Rogers TV- Talk Durham), Nancy (CFSCN Member), Carion Fenn (Founder), Carion Fenn Syringomyelia & Chiari Network), & Kellie (CFSCN Member).

Talk Durham - Rogers TV- Channel

Debra Talked to Carion, members of our social  network (NancyKellie), & Callers including Jamie McDonald, Sue, Harlen & Christine about the issues faced with living with Syringomyelia & Chiari Malformation. We will have segments available online soon. The response was that the show was very informative, and a great resource to help educate others. Click on the thumbnail below to view videos. 

A full copy of the show can be ordered by clicking the below link: 

Rogers TV Dub Request (Click here)

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Welcome to our community support

Syringomyelia (SM) (Sear-IN-go-my-EEL-ya); also known as SM, is a Syrinx (also known as a tubular filled cyst) that forms inside of the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the center of the spinal cord.

Chiari Malformation (CM) (Key-Ar-ee-mal-for-MAY-shun); are structural defects in the cerebellum, the part of the brain that controls balance. When the “tonsils” of the brain stem fall below the base of the skull, it cuts off or blocks the flow of Cerebral Spinal Fluid that runs between the brain and the spinal cord. 

Rare Diseases/ Disorders: There are over 7000 known rare diseases/disorders. 1 in 12 Canadians will be affected by a rare disease. Rare in the USA, when it affects fewer than 200,000 Americans at any given time. In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare. 50% of rare diseases touch children.

Latest Activity


Member (SM)
Lori Hart (SM) angel/Canada Rep replied to Calla Ibach (SM)'s discussion Paediatric neurologist in Alberta? in the group Doctor's Corner
"Hi Calla, I was just wondering if you ever found a Paediatric Neurologist ? Lori"
11 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep replied to Carion Fenn Network's discussion Canada- Ontario (doctors' info & review) in the group Doctor's Corner
"Nice to hear you are getting somewhere Diane !!!! Keep us posted!!!"
11 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Sandra Mulhall
"Happy Birthday Sandra !!!! From all of us here !!!! Best wishes Lori xo"
11 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Brenda Presthofer
"Happy Birthday Brenda !!!!! From all of us here !!!! Best wishes Lori xo"
11 hours ago

Blog Posts

Patients Needed: Carion Fenn Foundation Video Filming include Mayors, MPP & Patients.

Posted by Carion Fenn Network on May 22, 2016 at 10:30pm 0 Comments

Carion Fenn Foundation 1 year Anniversary Video with Video Pledges from Ajax & Pickering Mayors & MPP Michael Harris and more. We are filming our 1 anniversary video which we will be editing a 1 minute promo segment to promote our Rare…

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syrinx/Tumor

Posted by Lunga Moeketsi on May 20, 2016 at 5:42am 4 Comments

Hi,

Can a synrinx develop into a spinal tumor? My synrinx has grew about 3 mm since my Posterior fossa decompression in 2013. i have a session with the Neurosurgeon on Monday to get the final…

Continue

Help with Genetic testing and an update.

Posted by Brian Anthony on May 13, 2016 at 1:06am 1 Comment

To refresh my story, I've been dealing with progressively disabling symptoms for the last 15 years.  I've been seen by Johns Hopkins, The Chiari Institute, and now a neuro muscular doc at Drexel.  She wants me to have genetic tests which I cannot…

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Forum

Burning hands and feet 1 Reply

Hi,I have begun to have burning in my feet and hands. It's pretty intense. Do I speak to my family doc, Neurologist, or do I see a pain specialist??Thanks for any help. This is new and painful.Continue

Started by Ed Van. Last reply by Lori Hart (SM) angel/Canada Rep Jun 17.

Spinal cord stimulator 3 Replies

Hello all,My pain management has suggested that I try a spinal cord stimulator since pain meds and physical therapy are not helping me. I've done some research but have yet to find info on the stimulator and people who have a syrinx. So I'm…Continue

Started by Marquita. Last reply by Mary Rudy (SM) Jun 10.

Getting a MRI to test for a syrix 1 Reply

After noon everyone, welcome new members to the group.I also have a question for the group.I seen the neuro surgeon a fewdays ago. He has done shuntsurgies and decompression surgeries,so I feel confident he has enoughexperience. He told me my…Continue

Started by Betty Corey. Last reply by Lori Hart (SM) angel/Canada Rep Jun 2.

Doctor finally listening 2 Replies

OK, so my doctor is finally beginning to listen to me. I've tried really hard not to "tell my doctor his business" but I have continuously brought up this group, and a reference that I saw in this group to some studies done by the NIH. I have a…Continue

Started by Patrick Milligan. Last reply by Jayme May 26.

Top Discussions 

1 Spinal cord stimulator

Spinal cord stimulator

Posted by Marquita on June 9, 2016

2 Canada- Ontario (doctors' info & review)

Canada- Ontario (doctors' info & review)

Posted by Carion Fenn Network on April 6, 2010

3 Burning hands and feet

Burning hands and feet

Posted by Ed Van on June 14, 2016

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