Physiotherapy in Thalidomide Embryopathy

physiotherapyPhysiotherapy has greatly benefited a number of the Trust's beneficiaries in terms of health, fitness and wellbeing.

An understanding of Thalidomide Embryopathy and the issues experienced by those with this condition is essential for Physiotherapists when treating this group of people.

What is thalidomide embryopathy?

Thalidomide Embryopathy is a rare condition caused by a mother taking the drug thalidomide during pregnancy. Thalidomide was only available for a short time from April 1958 before being withdrawnin December 1961. Currently the Thalidomide Trust, set up to provide support and assistance to maximise quality of life, supports 464 beneficiaries aged between 53 and 60. Those affected have a varying pattern of damage depending when the drug was taken during the time the embryo was forming; some individuals have face and ear damage including different degrees of deafness; some have lower limb damage;  a large proportion have upper limb reduction defects and some have a mixture of the three. In addition some have internal damage.

Why write this article?

Fortunately thalidomide embryopathy is rare. Though the pattern of damage is unique, the damage can also occur sporadically or genetically in other conditions. Deterioration with age has brought some unique issues; some individuals have felt medical professions do not know enough about the history of thalidomide embryopathy or the damage; some have had  unhelpful experiences with medical professionals during their childhoods; some do  not feel they have been listened to properly; like others with chronic pain they may need extra encouragement to continue with therapies exacerbating pain before improvement.

This article aims to highlight the damage and issues experienced by those with thalidomide embryopathy, and to raise awareness of the common problems faced to give Physiotherapist Professionals support when they are assessing and treating individuals affected by thalidomide.

Some of the Trust's beneficiaries have greatly benefited from physiotherapy assessment and a rehabilitation programme together with regular massage and exercise. We have found early goal setting, including a long term exercise programme they can continue to take forward once the physiotherapy has been completed, to be very helpful.  Take a look at the benefits realised by beneficiary David Leckie, following a physiotherapy programme devised by his therapist, Fraser.

Summary of relevant damage:

  • Abnormal joints (thumbs, fingers, wrists, elbows, shoulders, hips)
  • Absent/reduced bones
  • Asymmetry muscles, bones compared to the other limb
  • Hypoplasia and or absent muscles
  • Blood vessels and nerves  absent or  lying in different anatomical positions
  • Unequal leg length (hypoplasia hip, sl reduction femur etc)
  • Damage to the inner ear possibly causing balance issues
    A detailed description of the anatomical variances is available separately.

Summary of issues experienced:

  • Early arthritis in the abnormal joints and in the nearby joints is common
  • Muscle spasm
  • Asymmetrical muscle weakness
  • Neurological issues; Peripheral nerve entrapment due to the abnormal anatomy is more common e.g. carpal tunnel due to radial club hand, radiculopathy and myelopathy of the spine due to early degeneration
  • Loss of flexibility and muscle strength with age
  • Gait abnormality
  • Postural abnormalities

Additional considerations prior to treatment

  • Underlying arthritis
    In order to prevent exacerbating underlying arthritis it may be helpful to grade exercise to avoid overuse problems. Thalidomide damaged limbs usually have unequal strength and ability and both asymmetric and scattered weakness may be present. The importance of pacing and progress are important to discuss at the outset to reassure the individual when progress seems slow or backward.
  • Muscle imbalance
    There are likely to be muscles that have less than anti-gravity strength on manual muscle testing.  Some muscles are present, but due to the malformation of the limb, may not easily be activated by the individual. For example, the triceps in many individuals with short arms are weak and over supported by muscles in the neck and shoulder. This leads to neck pain and nerve arm pain.  Gentle assisted movement to activate the muscle can initiate an increase in muscle function and a positive change in posture.
  • Weight management
    Specific attention should be given to weight management, as increased body weight leads to extreme joint loading, reduction in valuable flexibility and further reduced function.

Common problems and how they happen

Balance and falls

Balance remains particularly important and it may be impaired from the original damage as well as deteriorating further with age. The risk of severe injury from falls is significantly increased in an individual with shortened or deformed upper limbs who is unable to prevent or stall a fall. This is causing psychological distress for some and further reducing their quality of life. A tailored leaflet on falls for individuals is available on the Trust’s website, Falls and Balance Problems. There is an additional article for reference, Falls and Balance Awareness.

Upper limb

In shortening of the upper limb, the shoulder, acromio-clavicular joints, neck and spine move through an increased range of movement. The shoulders protract excessively to allow tasks to be performed and if retraction and normal posture is not encouraged excessive muscle spasm with associated muscle weakness develops between the shoulder blades and in the back. Core strength can compensate for this.

As neck and shoulder pain are common issues the surgeons working with this group in Hamburg use amongst other therapies;

  • Posture training with laser on the head
  • Both deep and superficial back muscle strengthening
  • Exercises to stabilise the scapula e.g. rolling out over a desk for those able to perform this; strengthening of the rotator cuff with door frame work with assistance for those with shorter arms.
  • EMS stimulation of the neck muscles

Lower limb

In individuals with fully-formed lower limbs and shortened upper limbs, using their legs for everyday tasks is common.  Favouring one “dominant” leg for specific tasks can cause asymmetrical weakness of certain muscles around the hip joint and the hip flexors. Alignment of the pelvis is often compromised.

Hip dysplasia leads to early arthritis.


Do you have a story to share?

If you have experience of working with a person with thalidomide damage, and both you and your client are happy to share it, please get in touch with us. Many professionals and beneficiaries find it incredibly helpful to read the stories of others in the same situation.

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