beneficiaries at a thalidomide trust fit for the future event focusing on keeping activeThe Changing Health Of Thalidomide Survivors As They Age: A Scoping Review

Elizabeth Newbronner, M.A. (Cantab), M.B.A


The aim of the review was to bring together, for the first time, the evidence about the thalidomide-related health problems thalidomide survivors are experiencing, as they grow older.

What was found

Twenty-five relevant papers were found. They included biomedical papers focusing on specific health problems, alongside surveys and mixed method accounts exploring the health of thalidomide survivors. Most studies had physical health as their primary focus.

The two most frequently reported groups of health problems were musculoskeletal and mental health conditions.


The key health themes reported in the 25 papers are summarised in the table below.

For each theme the author highlights the main issues experienced, and lists the relevant papers that give the details of the studies.

Click on a theme to view the relevant information.

ThemeMusculoskeletal ProblemsPain and Neuropathic SymptomsDental Problems/Facial DamageDeteriorating Sight and/or HearingGeneral HealthMental Health

Key Findings

Relevant Papers and Reports

Key Findings

  • Musculoskeletal problems are the most common health issue amongst thalidomide survivors
  • The prevalence and severity of musculoskeletal problems appears to increase with the severity of thalidomide survivor’s impairments but this relationship is not simple or linear
  • Secondary damage to joints and muscles is primarily caused by ‘overuse’ and postural adaptations
  • The pain and movement restriction caused by secondary damage is compounding existing impairments

Relevant Papers and Reports

Ref 12. Kennelly, C. Kelson, M. and Riesel, J. (2002). Thalidomide-impaired People: Quality of Life. The College of Health/Thalidomide Society.


Ref 13. Newbronner E, Chamberlain R, Borthwick R, and Baxter M (2011). Taking the Pressure Off: Evaluation of the Health Grant to Thalidomide-impaired People. The Thalidomide Trust: St Neots, UK.


Ref 14. Kayamori R (2013). Post-Thalidomide Syndrome 50 Years On. Japanese Journal of Rehabilitation Medicine. 2013; 50; 957-96.


Ref 15. Newbronner E, Chamberlain R, Borthwick R, and Baxter M (2012). Looking to the Future: Evaluation of the Health Grant to Thalidomide-impaired People. The Thalidomide Trust: St Neots, UK.


Ref 16. Nippert I, Edler B and Schmidt-Herterich C (2002). 40 Years Later: The Health Related Quality of Life of Women Affected by Thalidomide. Community Genet 5: 209–216.


Ref 17. Bent N, Tennant A, Neumann V and Chamberlain M A (2007). Living with thalidomide: health status and quality of life at 40 years. Prosthetics & Orthotics International 31(2): 147-156.


Ref 18. O’Carroll A, O’Reilly F and Whitford D L (2011). What has happened to people affected by thalidomide 50 years on? Irish journal of medical science 180(2): 475-478.


Ref 19. Vermette and Benegabi (2013). Study on the current living conditions of Canadian Thalidomide survivors and projections for the future. Thalidomide Victims Association of Canada.


Ref 20. Kruse A, Ding-Greiner C, Beckerr G, Stolla C, Becker A-M, and Baiker D (2013). Regular surveys on problems, special needs and care deficiencies of victims of Thalidomide – synopsis of final report presented to the Contergan Foundation for People with Disabilities. University of Heidelberg.


Ref 21. Peters K M, Albus C, Lungen M, Niecke A, Pfaff H and Samel C (2015). Damage to Health, Psychosocial Disorders and Care Requirements of Thalidomide Victims in North Rhine Westphalia from a Long Term Perspective. Federal Health Centre North Rhine Westphalia, Cologne.


Ref 22. Newman, R. J. (1999). Shoulder joint replacement for osteoarthrosis in association with thalidomide-induced phocomelia. Clinical Rehabilitation 13(3): 250-252.


Ref 23. Ghassemi, S. A. Danielsson, B Karlsson, J. Danielsson, A. J. (2014). Long term follow-up of thalidomide embryopathy: malformations and development of osteoarthritis in the lower extremities and evaluation of upper extremity function. Journal of Child Orthopaedics 2014; 8:423-433.


Ref 24. Ghassemi Jahani SA, Danielsson A, Ab-Fawaz R, Hebelka H, Danielson B, Brisby H (2016) Degenerative Changes in the Cervical Spine Are More Common in Middle-Aged Individuals with Thalidomide Embryopathy than in Healthy Controls. PLoS ONE 11(5): e0155493.


Ref 25. Meyers E M and Jutai J W (2011) The Disability Experience: Living with a Birth Defect Resulting from Thalidomide Exposure. Interdisciplinary Journal of Health Sciences 2 (2).

Key Findings

  • Neuropathic pain and symptoms are more common amongst thalidomide survivors (including those with no Dysmelia) than the general population
  • The causes of neuropathic pain and symptoms are disputed and often unclear
  • Thalidomide survivors are more vulnerable to compressive neuropathies but these are hard to diagnose and treat

Key Findings

  • Thalidomide survivors have higher levels of decayed, missing and filled teeth, and tooth wear than the general population
  • The causes of poorer dental health are multiple, including difficulties with dental hygiene, using teeth as tools and regurgitation
  • The dental and facial health of thalidomide survivors is vulnerable

Key Findings

  • Thalidomide survivors are reporting deteriorating sight and hearing
  • It is unclear whether this deteriorating in sight and hearing is thalidomide related or due to general ageing
  • There is very little evidence about the extent and nature of deteriorating sight and hearing, and the impact on thalidomide survivors’ quality of life

Key Findings

  • It is difficult to accurately measure blood pressure and body mass index when people have missing or short limbs and this make affect treatment/prevention difficult
  • Some thalidomide survivors are aware that they are at risk of lifestyle related diseases but find their thalidomide impairment make it difficult manage their weight or exercise
  • Hypertension may be more common amongst thalidomide survivors but more evidence is needed

Key Findings

  • Mental health problems appear to be more prevalent amongst thalidomide survivors than the general population
  • Depressive disorders are the most frequently diagnosed or reported mental health problem
  • The relationship between mental health and severity of impairment is unclear but thalidomide survivors with severe hearing impairment and facial damage appeared to be at greater risk of developing depression
  • Other risk factors for poor mental health are similar to the general population and include poor social networks; living alone; unemployment; the need for on-going assistance; and recent experience of pain

Importance of the project for people with thalidomide damage and Professionals

The literature about the health of thalidomide survivors as they age is not extensive. It is not of the highest level of scientific rigour and many of the biomedical studies have a narrow focus on specific conditions or pathologies.

Nevertheless, the studies in this review make an important contribution to an under researched area and together they do present a picture of the secondary damage people are now experiencing.

The 25 papers above, and the full reference list in the published article provide an important bibliography of available information on this issue at the present time.


The full published article can be viewed here:

Elizabeth Newbronner, M.A. (Cantab), M.B.A
The changing health of Thalidomide survivors as they age: A scoping review



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