About the Survivors

About the Canadian thalidomide survivors

To this day, about a hundred thalidomide survivors live in Canada. Some of our members having passed away over the last few years, we sadly become aware of the fragility of our lives. Those who left us too soon are forever in our hearts, as well as all the infants that never came into the world or died at a very young age due to the teratogenic effects of thalidomide. Thalidomiders are now in their late fifties and are experiencing faster physical degeneration than the average person, because of the stress that is being put upon their different body structures. Even though the condition varies a lot from an individual to another, this premature deterioration of musculoskeletal structures really impacts their general health, their capabilities, their autonomy and their quality of life. The needs of this unique population are numerous and striking. However, thalidomide survivors are known for their resilience and their creativity in accomplishing their daily activities.

Woman with short arms cooking in her kitchen.
Woman with her service dog
Woman with short arms blow drying her hair.

Here is an overview of the different conditions affecting the lives of our members. As said before, the nature of the malformations varies a lot from one person to another, depending on when thalidomide was taken during pregnancy. Hence, not all of our members are dealing with every condition mentioned below. Some of them only have one, while others must deal with an amalgam of many.

Sight (eyes)

There were malformations at birth due to thalidomide that affected one or both eyes, and therefore vision at various degrees.

Some victims have reported, aside from indications recorded at birth, deterioration of eyesight for many reasons. While some can be traced to standard population identified degeneration issues, other deteriorations could arguably be a result of strain attributed to shorter limbs whereby books, computer screens, etc. are at a very close distance from the eyes. Some other considerations reported are difficulties associated with traditional solutions such as lack of ability to physically manage traditional glasses or to apply contact lenses.

Reports include long-sightedness, short-sightedness, eye strain, and blurred vision. The most common tool to accommodate these issues are magnifying devices.

A secondary condition reported attributed to eye problems is headaches, etc. For those with hearing disabilities associated with thalidomide, the eyes have an obvious “extra” importance and stress associated with deterioration with this sense is high.

Hearing (ears)

Ear malformations at birth due to thalidomide have long been recognized, to various degrees, from complete absence or severe malformation of the ears resulting in deafness to less identified malformations (smaller ear canals) resulting in different degrees of hearing loss.

Many incidents of extra vulnerability to ear infections have been reported. This temporary indication has great impact on hearing and the lengths of infection are dependent on individual capacities to fight them off.

Secondary issues regarding hearing loss but very significant, are speech impairments, and certainly, arguably learning difficulties.

Particular to thalidomide victims with profound hearing affectations and upper limb malformations is the issue of communication. Many may understand sign language but are not physically equipped to use sign language due to digit (fingers) absences. Lip reading by others to be understood depends on the other’s ability to read lips, not as common a skill as people think, therefore creating isolation issues, and learning disabilities.

Dental and Oral (mouth and teeth)

Aside from an alleged increase of “cleft palate” at birth for persons born disabled as a consequence of the drug thalidomide, there are many reports of mouth and dental issues and decay due to the fact that most victims with limb malformations have accommodated limb deficiencies by using their mouths as extra limbs.

Dislocation and pain of the jaw, dental decay and tooth loss, neuralgia, and general stress have been reported. Many reports exist of gum diseases and tooth decay. Yellowing of teeth and brittleness of teeth have also been reported.

Concern is heightened for those who many have teeth removed necessitating dentures and whether the mouth would then become another absence of a relied on tool, and how people with limb malformations could cope with denture care and application.

Nasal (nose)

There are many reports of nasal malformations of various degrees often leading to many sinus infections whereby simple colds and flu become a more serious problem.

A common trait of thalidomide victims appears to be depressed nose bridges.

Neck, Shoulders, Arms

In cases of those with absence or shortening of upper limbs, heavy reliance is placed on the neck to use the neck and mouth as extra compensating tools. The neck is often use to carry. Pain and inflammation is reported due to the undue stress placed on this area of the body. For those with affectations of the lower limbs, and who use wheelchairs to get around, the mouth and neck become carrying tools too while the arms are otherwise engaged. Loss of movement in the neck, and painful inflammation have been reported. Also resultant are reports of necks being out of alignment causing blurred vision in one or both eyes.

Locking of necks and many shoulder pains have been reported.

The arms, regardless of length, experience pain from “over-use” and unusual use. Reports also exist of carpal tunnel syndrome.

Legs, Hips, and Feet

Some thalidomide victims were born with one or both hips dislocated, or even malformations of the hip. This has often led to legs of differing lengths, and therefore has led to back problems.

Problems have been reported in hips and lower back for those who used to wear artificial legs as they would walk by swinging their hips forward, whilst supporting the weight of the artificial limb.

Differences in length of legs can lead to build up of hard skin, which without treatment causes deep and painful cracks. Other issues include: hammer toes, vertical cracking/splitting of nails, and ingrown toenails. Those with short upper limbs are unable to care for their own feet and toe nails, creating other issues.

Reports of knee problems for those using feet for hands, including dislocation of knees. Reports of numbness and lessening dexterity in legs is a major concern for those without arms, who would not be able to use canes or walkers.

Backs (spine)

The following are degenerations reported from individuals with thalidomide embryopathy:

  • Scoliosis of various degrees and progressions;
  • Intervertebral fusion;
  • Spinal cord compression;
  • Non-ambulatory people and people with shorter arms, without elbows, often have a spine that is less curved than normal at the upper part of the back;
  • The restricted range of movement of the upper and lower parts are often compensated for by using some other part of the back;
  • Pain is often a result of overloading the soft tissues of the joints and the muscles;
  • Extreme back pain often has the result of forcing individuals to take hours to fully awake, in stages, from bed, and sometimes appears to involve a “seizing up” whereby the individual cannot move instantly;
  • Clearly, the balance of the body was affected by shorter arms and legs since the point of gravity is different thereby impacting on the back.

Other (internal organs/medical conditions)

What follows is a list of some internal difficulties and medical conditions reported without comment:

  • Lack of appendix (still get classic symptoms of appendicitis, but on operating, appendix found to be absent in some cases);
  • Stomach problems and digestive difficulties;
  • Constipation, irritable bowels (also issues surrounding birth with lack of anus, and reports of incontinence);
  • Heart problems (some could be hereditary, but others are possibly thalidomide-related);
  • Absence of spleens;
  • Malformations of liver, kidneys, lungs (possibly accounting for respiratory conditions ie. Asthma, etc.);
  • Malformations of bladder or urinary tract (for those who use wheelchairs, many when younger would refrain from frequent urination, and some are now experiencing problems with their bladder and continence);
  • Sleep apnea;
  • Shooting and dull pains from unidentified sources;
  • Chronic fatigue;
  • Sores for those constantly sitting and rotating on buttocks to use their feet, bed and pressure sores for those who use wheelchairs (healing of these sores takes longer as constant use of the pressure point is required);
  • Odour from urine and bowel expression is a difficulty;
  • Muscle deterioration and atrophy;
  • Arthritis;
  • Over-development of muscles resultant from “over-use” of present and/or malformed limbs.

Fertility (and genitalia)

For men there were malformed genitalia reported. Another issue is low sperm count or complete infertility. In the case of undescended testes, fertility issues and increased alleged risk of testicular cancer are issues.

For women there are reports of problems in conceiving apparently due to malformations of reproductive tract and uterus. There appear to be recurrent miscarriages, pre-term labours and a marked increase in caesarean births. Moreover some skeletal malformations are responsible for inability to deliver naturally without risk to the unborn.

For more information, we invite you to read the report of our Study on the Current Living Conditions of Canadian Thalidomiders and their Projections for their Future, conducted in 2011. Please note that the conclusions of the report must be tempered by the fact that the Government of Canada launched, in 2015, the Thalidomide Survivors Contribution Program, which undoubtedly alleviated the financial insecurity experienced by most of our members. There is also reasons to believe that access to specialized healthcare, for which cost was the biggest obstacle, has improved, but we are not able to confirm that information at the moment. However, the findings regarding premature physical degeneration as well as the resulting pain and loss of autonomy remain very relevant.

You can also read the report of a survey conducted in 1999 by TVAC about the musculoskeletal anomalies, general health and living conditions of its members.