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Compilation of Anecdotal and self-expressed Physical Degeneration of Persons born Disabled as a consequence of the drug Thalidomide

Compilation of Anecdotal and self-expressed Physical Degeneration of Persons born Disabled as a consequence of the drug Thalidomide

Discussion Paper
Compiled by Randolph Warren / CEO
Thalidomide Victims Association of Canada
February 9, 1999

Introduction
This document is meant only to serve as a discussion document and not definitive. There has also been a study conducted involving Canadian thalidomide victims that will replace this paper when compiled. Moreover, further studies and literature will be added to this topic from other countries’ sources.

In the meantime, what follows are some talking points from reports by individuals (identities and sources protected). Thanks to all those who assisted in this compilation for this necessary Paper.

The largest concern facing thalidomide survivors is what will happen next, as new disabilities are acquired due to degeneration of bodies.

All identifying features regarding case studies have been removed and this compilation is summarized.

This document is by no means complete as to every possible deterioration.

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. Some can be traced to standard population identified degeneration issues.

Some of the 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 Issues (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.

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.

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.


Conclusion

There are many more issues and more precise conditions, but they are best left to controlled studies. The overview provided here should provide a good starting point.

It is important to understand that these indications and deteriorations are not a forecast for every thalidomide victim, but have been reported for some. The only accurate forecasting will be from studies of all of these issues and more.

Certainly, one of the most important mechanisms for dealing with these issues will be the communication that must exist between doctors to share information and be resources for each other. Some physicians only treat one or two thalidomide victims and require a conduit for potential time-saving in diagnosis with less burden for patients.

Moreover, studies must be undertaken to determine and forecast degeneration in this unique population.

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