For young people, less heard ailment Ankylosing Spondylitis (AS) is an emerging disturbance, but that is a stark reality: initially, victims develop symptoms such as low back pain and stiffness that lasts for more than 30 minutes and worsens in the morning or after prolonged inactivity.

Panacea lies in regular exercise before AS grips individual like a wasp with stiffened ligaments and muscles. Dr. Uma Kumar, states that such cases were burgeoning, and timely treatment can only stave off complications.

Patients with AS must exercise regularly because it helps to limit spinal deformity and maintain their spinal movement and flexibility, while also relieving the back pain. Swimming and deep breathing are the best exercises. In addition, a hot shower in the morning can help to ease the pain and stiffness. Patients should avoid smoking, eat a healthy diet and maintain a healthy weight.

AS is not curable, but it is completely treatable if detected early. Only 10% of patients have a severely disabling disease. With the help of the correct medication and lifestyle modification, approximately 80% people with AS remain completely independent or just minimally disabled in the long-term.

In an exclusive interview to InnoHEALTH magazine, Dr. Kumar traces the original meaning of the disease, and says the word Ankylosing Spondylitis (AS) is derived from the Greek words ankylosis meaning ‘stiffening’, spondylosis meaning ‘vertebra’, and – it means ‘inflammation’.

She answered several questions on the ailment.

Question: Can you please explain in detail AS?

AS is a chronic inflammatory type of spondyloarthritis (a broad term for all types of arthritis that affects the spine) that is further classified as an ‘axial spondyloarthritis’ because it affects the joints of the spine and pelvis (where the sacral bone attaches to the iliac bone on either side of the body). When spinal ligaments get inflamed at the point where they attach to the vertebrae, the ‘bone-making cells’ of the body get stimulated and start to grow bone within the ligaments, which results in the formation of bony bridges between adjoining vertebrae – this is what leads to a stiff back.

Question: Does it affect other parts of the body as well?

Sometimes, other joints of the body such as the ankle, knee, and hip may also be affected. AS is more common in young men between 20 and 30 years of age than women. It can occur in children as well. The prevalence of AS ranges from 0.8% to 1.8% in the general population.

Question: Are genetic and environmental factors linked to AS?

The exact cause of AS is unknown. However, there is a strong genetic predisposition and most patients with AS have the HLA B27 gene. About 6% to 8% of the Indian population has the HLA B27 gene and amongst them, those with a family history of AS in a first-degree relative have a 30% chance of developing the disease. However, only 2% of individuals with this gene actually develop the disease. It is hypothesized that some stimuli (e.g. environmental factors, gut microbiome) trigger AS development in genetically predisposed individuals. Moreover, AS can also develop in individuals without HLA B27. It is likely that there are some undiscovered genetic factors that could also be involved in its etiology.

Question: Whether Initial symptoms itself are alarming or not?

Initial symptoms may not appear alarming, but they can be serious. Patients with AS initially develop symptoms such as low back pain and stiffness that lasts for more than 30 minutes and worsens in the morning or after prolonged inactivity. They often find it difficult to turn on the bed during the latter part of the night and the pain sometimes wakes them up from sleep. Typically, the back pain improves with activity. Some of the tendons and ligaments of the body may also get inflamed (e.g. costochondritis & Achilles tendinitis).

Question: What are the other symptoms?

Other symptoms of AS are chest stiffness; pain in the neck, hip, shoulder, glutes (buttock) and heel; as well as arthritis of the knee, ankle, toes or fingers. About 30% of the patients may develop uveitis (painful red eye) and a similar number of patient’s long-standing disease may develop osteoporosis (thin weak bones). The lungs, heart (valves) and kidneys may also get affected.

Question: How can it be diagnosed accurately?

We do clinical diagnosis with imaging and genetic tests. AS is diagnosed based on a patient’s clinical profile and radiological (X-ray) investigations. Blood tests include genetic tests to detect the HLA B27 gene; and tests that detect raised erythrocyte sedimentation rates (ESR) and increased C-reactive protein (CRP) levels to help support the diagnosis. X-ray imaging cannot detect bone changes during the initial stages of the disease making early diagnosis difficult. However, MRI scans of the sacroiliac joints can be used to diagnose AS in the early stages, when the X-ray of this region still appears ‘normal’.

Question: Can treatment help to slow down or stop the progression of AS?

The aim of treatment is to relieve pain; slow down or stop disease progression, and maintain mobility of the spine. Medicines for AS include non-steroidal anti-inflammatory drugs (NSAIDs), analgesics, disease modifying anti-rheumatic drugs (DMARDs) and biologics (targeted therapy). NSAIDs provide pain relief and also retard the progression of AS and patients prescribed these medicines must take them regularly and NOT ‘as and when required’. DMARDs like methotrexate, sulphasalazine, and leflunomide are prescribed for patients with peripheral arthritis. Patients who do not respond well to these drugs may be prescribed biologics such as anti-TNF alpha agents and anti-IL-17 inhibitors, as long as they have not had TB or a similar significant illness in the past.

These biologics and other tools that help us assess the disease have made it possible for patients to lead an almost normal life. Oral or parenteral glucocorticoids have no role in the management of AS though intraarticular steroid injections may sometimes be needed.

Question: Is surgical intervention a solution?

Surgery is rarely required for correcting spinal deformity, though a hip or knee replacement surgery may be needed if there is significant joint damage.

Question: What should be a frequency for consulting doctors?

Regular follow-up with the doctor is extremely important to adjust the dose and to detect any drug adverse effects or any complication or comorbidity at the earliest.

The All India Institute of Medical Sciences will soon establish the Centre for Advanced Research and Excellence for Childhood Neuro developmental  Disorders.

The Centre of Excellence will come up at the Mother and Child Block at an approved amount of Rs 14.3 crore. The broad category of Neuro developmental disorders to be covered by the CoE would be Neuromotor impairments, Motor, language and cognitive delay and epilepsy. Vision and hearing impairments will be covered as comorbidities.

According to AIIMS Deputy Director Administration V. Srinivas, the proposal for establishing the CoE was conceptualised by a team of senior faculty led by Prof V. K. Paul and Prof Sheffali Gulati.

The state-of-the-art Centre will provide high quality affordable care, perform high end diagnostic and therapeutic research and act as an education and training hub.

The five key elements of the CoEare –Creation of a National Registry, National Knowledge and Training Centre, Advanced Diagnostics, Advanced Therapeutics& Rehabilitation and a helpline for Tele-consultation.

The National Registry will be the first of its kind in the country paving the way for meaningful research, policy making and advocacy for childhood neuro development disorders.

A standardised list of investigations for diagnosis of neuro developmental disorders would be developed including advanced genetic investigations in collaboration with Institute of Genomics and Integrative Biology. The genetic tests would help in antenatal counselling preventing further birth of affected children in families and unveiling of newer pathogenic and therapeutic pathways.

The Centre will focus on use of technology-aided rehabilitation strategies for children with neuro developmental disorders. This will be done in collaboration with IIT Delhi utilising textile technology and biomedical engineering. It will provide reliable and round the clock toll-free telephonic guidance.

The India Infrastructure Finance Company Limited as part of its CSR activities has collaborated for the purpose.

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Read all the issues of InnoHEALTH magazine:
InnoHEALTH Volume 1 Issue 1 (July to September 2016) – https://goo.gl/iWAwN2 
InnoHEALTH Volume 1 Issue 2 (October to December 2016) – https://goo.gl/4GGMJz 
InnoHEALTH Volume 2 Issue 1 (January to March 2017) – https://goo.gl/DEyKnw 
InnoHEALTH Volume 2 Issue 2 (April to June 2017) – https://goo.gl/Nv3eev
InnoHEALTH Volume 2 Issue 3 (July to September 2017) – https://goo.gl/MCVjd6
InnoHEALTH Volume 2 Issue 4 (October to December 2017) – http://amzn.to/2B2UMLw
InnoHEALTH Volume 3 Issue 1 (January to March 2018) – https://goo.gl/fksdQx

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