Welcome to Carion Fenn Network. A place to share, learn & support. (Syringomyelia/Chiari Malformation/ Rare & Chronic Diseases & Seniors)

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Welcome to our Network

Welcome to our network. Glad you are here with us. Feel free to browse around and get to know our community. You can read other members profiles to see what they are going through, what treatment or medications they are trying and how they have been coping. Have questions? Want to hear from others or engage with our members? Start a blog, forum or join our groups. At the top of our website are tabs to help you get familiar with our network. Check out our events page for upcoming events. Membership to our network is free, however you can become a subscriber or donate to help build our network and support our community. Also available is information for you get your wristband to help increase awareness. Again, welcome to our community. No one should ever be alone with an ailments and its important to get support and support each other because Together We Are Stronger.

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Health 180 with Carion Fenn

Health 180 with Carion Fenn on Rogers TV Durham. Host, Carion Fenn talk to doctors, patients and other experts. Learn Health & Wellness tips, 


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Carion Fenn Network focuses on providing the platform for our members to support each other. With your contribution, you are helping our team provide educational information, helpful resources, and provide support to our members needed to navigate their ailments. Every donation matters in ensuring that our network is available to everyone. Keep in mind that we do have members who can't afford to subscribe or donate who need the support so if you can donate, please do so that someone who can't may continue to have the support they need.

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


Syringomyelia & Chiari Wristband

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Latest Activity

Cheryl Pitter left a comment for Tami Christmann
31 minutes ago
Cheryl Pitter left a comment for Sue England SM
32 minutes ago
Cheryl Pitter left a comment for Christian Credeur
34 minutes ago
Cheryl Pitter left a comment for Cheryl
35 minutes ago

Our Global Causes

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. 

  • There are two major forms of Syringomyelia, acquired and congenital.
  • Symptoms develop slowly over time and may occur on one or both sides of the body.  
  • Syringomyelia may also be caused by spinal cord injuries, spinal cord tumors, and damage caused by inflammation in around the spinal cord. In some cases, the cause is unknown (idiopathic).

Chiari Malformation (CM) Key-Ar-ee-mal-for-MAY-shun: 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. 

  • Chiari Malformation has several different causes.
  • Later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to traumatic injury, disease, or infection. This is called acquired or secondary Chiari malformation. 
  • By structural defects in the brain and spinal cord that occur during fetal development. This can be the result of genetic mutations or a maternal diet that lacked certain vitamins or nutrients. This is called primary or congenital Chiari malformation.  

Rare Disease: 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. 

  • 350 Million people globally are fighting rare diseases.
  • Rare Diseases Impact more people than aids and cancer combined.
  • Approximately 50% of the people affected by rare diseases are children; 30% of children with rare disease will not live to see their 5th birthday.

Chronic Disease: A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. 

  • Chronic diseases such as diabetes, cancer, arthritis, mental illness, and cardiovascular and chronic respiratory diseases are major contributors to reduced quality of life, loss of productivity, and increased hospitalization and health care costs as well as premature death in Canada.
  • Out of every 5 Canadians aged 20 years or older, 3 have a chronic disease and 4 are at risk of developing a chronic condition.

Carion Fenn Foundation is a registered charity established to promote health by providing support services and resources for chronic disease management, while educating the public and those suffering with Syringomyelia and Chiari malformation about rare diseases. 


Virtual activities for seniors during Covid-19

Carion Fenn Foundation is launching a 12 week seniors program and looking for your ideas on what virtual programs can be done during Covid-19 to help our seniors community. Would love to heard your suggestions. Continue

Tags: seniors, virtualseniorsprogram, seniorsprogram

Started by Carion Fenn Network in Sample Title Oct 14, 2020.

Thyroid 2 Replies

Hello everyone,I have been have on and off problems with breathing and ticklish throat also get a dry mouth at night while sleeping, I have noticed my neck around my throat area has become enlarged. I am wondering anyone experience thyroid problems…Continue

Started by Shaun Kelly in Sample Title. Last reply by Shaun Kelly Dec 14, 2018.


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