FAQ

FREQUENTLY ASKED QUESTIONS

  
About the Thalidomide Victims Association of CanadA


about thalidomide


 
About the Thalidomide Victims Association of Canada

"Who founded TVAC?"

The Thalidomide Victims Association of Canada was formed in December 1987 with the assistance of the War Amputations of Canada. It was originally founded to support the efforts of the War Amputations of Canada Thalidomide Task Force to seek compensation for Canadian-born thalidomide victims, in December 1987.

The five founding thalidomide victims were:

  • Randolph Warren (1st President)
  • Gavin Bamber
  • Paul Murphy
  • Alvin Law
  • Jim Bresnahan


On June 23, 1988, TVAC was incorporated under Part II of the Canada Corporations Act.

The first gathering of Canadian thalidomide victims was held in Ottawa, from August 2nd to 4th, 1988, to celebrate the creation of the organization.

On December 15th, 1991, TVAC was restructured into its present form, which requires it to be wholly managed and controlled by its members.

TVAC has been recognized as a charitable organization since May 1st, 1992.

 

"What is the mission of the Thalidomide Victims Association of Canada (TVAC)?"

The Thalidomide Victims Association of Canada is a non-profit charitable organization that was formed to provide peer support, information exchange, non-monetary programs and services, and advocacy for Canadian thalidomiders.

MISSION STATEMENT
The Thalidomide Victims Association of Canada exists to empower its members and to improve their quality of life.

As well, with thalidomide being re-introduced on the market, TVAC has taken the mandate of informing the public on the devastating effects of this drug and encourages caution and vigilance when using any teratogenic product currently available. TVAC is also committed to gathering and disseminating information, as accurately as possible, on the original tragedy. Through this commitment, TVAC makes sure that the Thalidomide tragedy is never forgotten and, consequently, that the medical body, health care decision makers and the pharmaceutical industry become the unshakeable authorities of an ethical management and fully imputable for the research, prescription and marketing of any medication, especially teratogenic.

  "I am a Canadian thalidomider but have never heard of your Association. How do I become a member?"

PLEASE CONTACT OUR HEAD OFFICE.

  "I am an American thalidomider but have never heard of your sssociation. How do I become a member?"

PLEASE CONTACT OUR HEAD OFFICE.

 

"I know someone who might possibly be another Canadian victim of the drug thalidomide. What should I do?"

If possible, ask the person to communicate directly with TVAC's Head Office in order to explain his or her situation.

Persuant to his/her request, this person will receive the necessary information on the thalidomide tragedy.

It is not TVAC's policy to communicate with the "suspected victims". We do not intrude in their lives. Consequently, it is up to them to initiate the procedures.

Furthermore, TVAC is not mandated, nor does it have the financial or professional resources to accompany any person on their search for recognition, whether legal or official, as a thalidomide victim.

 

"I know someone who might possibly be another American victim of the drug thalidomide. What should I do?"

If possible, ask the person to communicate directly with TVAC's Head Office in order to explain his or her situation.

Persuant to his/her request, this person will receive the necessary information on the thalidomide tragedy.

It is not TVAC's policy to communicate with the "suspected victims". We do not intrude in their lives. Consequently, it is up to them to initiate the procedures.

Furthermore, TVAC is not mandated, nor does it have the financial or professional resources to accompany any person on their search for recognition, whether legal or official, as a thalidomide victim.  

"I wish to find out what TVAC’s position is on a particular subject. Who do I contact?"

To begin with, make sure you browse all areas of our Web Site. It is most likely that your answer is already here.

If you have any further questions, you should contact Mercédes Benegbi, our Executive Director. She can be contacted at:

Thalidomide Victims Association of Canada
7744, Sherbrooke Street East, suite 102
Montreal, Quebec, Canada
H1L 1A1
Phone: (514) 355-0811
Toll free (Canada only): 1-877-355-0811
Fax: (514) 355-0860
Email: mercedes.acvt@sympatico.ca

 

"I would like to get in touch with one of your members. Could you please send me their address and/or phone number?"

NO!
TVAC has strict policies in place to protect the privacy of its members. If you wish to contact someone, you can send your message along with your name, address, and the name of the person you wish to contact to TVAC’s Head Office. The Office will then forward your inquiry to the person you are seeking, and it will be left up to them to respond or not.

 

"Is there anything I can do to help your association?"


YES! The function of the Thalidomide Victims Association of Canada depends largely on corporate and individual donations to support its programs and services, including this very Web Site. If you would like to help us financially, or in some other way, please contact our Head Office for more information.

You can also help by helping yourself: Remember Us ... Know your Medication!

 
About thalidomide

"What are some of the effects this drug has on the foetus?"

They include but are not limited to:

  • bilateral shortened limbs (legs / arms / all 4) known as phocomelia
  • bilateral missing limbs (amelia)
  • missing fingers and / or toes
  • webbing of fingers and / or toes
  • extra fingers and / or toes
  • partial or total hearing loss
  • partial or total loss of sight
  • paralysis (usually of the facial muscles)
  • improper formation of the digestive tract
  • improper formation of the duodenum (most often fatal before or soon after birth)
  • improper formation or absence of the anus
  • lesions on major organs (most often fatal before or soon after birth)
  • death

There are ongoing physical degenerations being experienced by thalidomide victims today, adding the burden of new medical conditions and / or disabilities. Please see degeneration.

 

"What is phocomelia?"

Translated literally PHOCOMELIA is — from the Greek word phoke meaning "seal", and melos meaning "limb"; in which the hands, or feet, or both, start immediately from the main joint (shoulder / hip), like the flippers of a seal.

This is the limb malformation most traditionally associated with Thalidomide.

 

"I’ve heard Thalidomide related disabilities can be passed on to my children and/or grandchildren, is this true?"

NO!
See: 

 

"What is the chemical name of thalidomide?"

The building blocks that compose the thalidomide molecule are:
the formula — C13H10O4N2

in words, this is expressed as:

  • 13 atoms of carbon (C), requiring 4 bonds each;
  • 2 atoms of nitrogen (N), requiring 3 bonds each;
  • 4 atoms of oxygen (O), requiring 2 bonds each;
  • 10 atoms of hydrogen (H), requiring 1 bond each.


According to SUFFER THE CHILDREN: The Story of Thalidomide, the thalidomide substance was also known as:
N-PHTALYLGLUTAMIC ACIDIMIDE

The chemical name of thalidomide was phthalimido-glutarimide, and it was better known by Chemie Grünenthal as K17.

 

"Are there any side effects that could affect the person taking thalidomide?"

Aside from the most well-known teratogenic effects which are the birth defects thalidomide causes in developing foetus, there are many other side effects that can affect the patient taking the drug. The most serious of these is peripheral neuritis which can be irreversible.

Other known side effects include::

  • drowsiness (which can be severe)
  • skin rash (with or without fever)
  • fast heartbeat
  • slow heartbeat
  • low blood pressure
  • mood changes
  • dry mouth
  • headaches
  • nausea
  • constipation
  • increased appetite
  • puffiness of the face and limbs (edema)
  • dry skin
  • itching
  • irregular menstrual period
  • low white blood cell count
  • thyroid problems
  • blood sugar too high or too low
  • "buzzing in the ears"
  • dizziness
  • allergic reactions

ALL SIDE EFFECTS SHOULD BE REPORTED TO YOUR DOCTOR.

 

"What is peripheral neuritis?"

PERIPHERAL NEURITIS can occur anywhere in the body. It may begin with a prickly or tingling feeling in the hands and / or feet, and is followed by sensations of numbness and cold. That numbness spreads and is followed by severe muscular cramps, weakness of the limbs, and lack of coordination. Some of the symptoms may improve or disappear when the cause is removed, but the damage can in some cases remain irreversible.

Peripheral neuritis is a form of nerve damage.

Patients using thalidomide are advised to immediately stop taking thalidomide and contact their doctor if they experience the first symptoms associated with nerve damage which include burning, numbness, or tingling of the arms, hands, legs, or feet. It is then, with a doctor’s advice that the patient can decide whether the benefit they may be receiving from thalidomide use for their condition outweighs the risks of possible permanent damage to their nerves by continued use of the drug.

It was concern over reports of this side effect that led to Dr. Kelsey’s delay of the original thalidomide application for licensing in the United States. This delay resulted in sparing the United States from a tragedy on the scale of West Germany and other countries around the world.

 

"Are there any victims of thalidomide in the United States?"

Yes. Although thalidomide was never licensed for distribution in the United States, it did not escape the drug’s wrath. Approximately 2.5 million sample tablets were handed out to 1,267 US doctors for ‘clinical trials’, while the pharmaceutical company was waiting for licensing approval from the FDA. These doctors in turn passed the tablets on to about 20,000 patients between 1958 and 1961. The actual number of thalidomide victims born in the US will never be known, but reliable estimates are that 17 were born of which 10 persons survive today.

 

"What is thalidomide being used for today?"

United States

Since July 16, 1998, thalidomide (THALOMID®) is licensed for use in the United States in treating complications related to leprosy. Since October 26, 2006, it is also authorized in cases of Multiple Myeloma. To consult the FDA's (Food ans Drug Administration) complete fact sheet about thalidomide, click here. Its distribution is exclusively controlled by the S.T.E.P.S. Program.

 

Canada

Since August 4, 2010, Canada authorizes the use of thalidomide (THALOMID®) in the treatment of patients with multiple myeloma who are 65 years of age or older. To consult Health Canada's complete fact sheet about thalidomide, clickhere. Thalidomide is only available through a controlled distribution program called RevAid®.

Under the practice of medicine a physician can prescribe this drug for a condition other than multiple myeloma.

TVAC reiterates the need for extreme vigilance in the distribution and use of thalidomide.
 

"Is thalidomide effective in treating the indications listed on this Web Site?"

The Thalidomide Victims Association of Canada chooses not to take a position regarding thalidomide’s effectiveness for any of the indications listed. This is best determined between doctors and patients.

TVAC is very concerned that thalidomide appears to be becoming a drug of first choice again, instead of the drug of last resort that thalidomide victims believe it should be.

 TVAC does remind everyone that they must know all risks associated with thalidomide (and any other teratogenic drug) in order to make their own Risk-Aware Choice as to whether they will or will not take thalidomide.

 

"Can you tell me where I can get some thalidomide?"

NO!

The best thing you can do is consult with your doctor or specialist.   

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