Nishapa Leelearkij’s life-altering diagnosis and challenges in accessing treatment have spurred her to advocate for the rights of other chronic disease patients.

Nishapa Leeleartkij’s journey with ulcerative colitis began at the age of 29. Ulcerative colitis (UC) is one of two main types of inflammatory bowel disease (IBD) , a group of disorders involving chronic inflammation of the tissues in the digestive tract. When the digestive tract loses its function, it cannot digest food and absorb nutrients normally, leading to malabsorption.

What is Ulcerative Colitis?

Ulcerative colitis (UC) is a long-term condition where the colon (large intestine) and rectum become inflamed, causing ulcers to develop on the colon’s lining, which can bleed and produce pus. In severe cases of ulcerative colitis, the entire colon may be affected by chronic  inflammation.

The autoimmune condition is thought to be caused by the immune system mistaking harmless bacteria inside the colon as a threat, and attacking its own tissues, causing the colon to become inflamed.

Categorised as a rare disease, UC affects approximately 0.2 per 100,000 population in Thailand, or less than one in 100,000 persons.

While the causes of UC are unknown, experts believe genetic factors may play a significant role. The risk of developing ulcerative colitis increases by 30% if they have a relative who has been diagnosed with the disease. Individuals between the ages of 15 and 30 years are found to be at highest risk of developing this disease.

Symptoms

Nishapa during treatment days

Nishapa during treatment days

Nishapa began exhibiting some of the common symptoms of UC such as frequent diarrhoea and blood in her stools. She also suffered from abdominal pain and fatigue almost daily.

Fortunately, Nishapa was able to receive an accurate diagnosis for her condition. About 25% of individuals with undiagnosed rare diseases have to endure the complex medical journeys or “medical pilgrimages” for five to 30 years prior to diagnosis , while over 40% rare disease patients in Asia Pacific are misdiagnosed.

Challenges faced by UC patients

The challenges associated with UC lie in the complexities of its treatment and management. Because the illness presents differently in each individual, a more personalised approach to treatment is required which necessitates close collaboration between healthcare professionals and patient.

Aside from its physical impact, the emotional and psychological impact of living with a chronic disease like UC cannot be discounted. Patients can experience anxiety, depression, and social isolation, as well as feelings of loneliness and shame due to lack of general awareness about the disease.

Additionally, patients with IBD can incur financial burdens that surpass that of non-IBD patients. Findings from the Crohn’s & Colitis Foundation’s cost of care study (2019) revealed that:

  1. IBD patients incurred over three times higher annual costs than non-IBD patients
  2. IBD patients absorb more than twice the annual out-of-pocket costs than non-IBD patients
  3. Annual costs of IBD were substantially higher in the year of the initial diagnosis
  4. The biggest drivers of costs are therapeutics, co-morbidities and emergency room visits.

Treatments for UC

Treatments for UC depends on the severity of condition and how often symptoms flare up in the patient. While the condition cannot be cured, existing treatments aim to reduce the symptoms, which is known as inducing remission, or a period where there is an absence of symptoms; and to maintain remission for as long as possible.

At first, Nishapa underwent steroid injections at the Phra Mongkut Klao Hospital in Bangkok to manage her UC. Unfortunately, the injections offered only temporary relief. There was a life-saving therapy available to manage the condition, but like treatments for most rare diseases, the cost of the therapy was prohibitively expensive for her.

Nishapa was then referred to Axios International, an international patient advocacy organisation that provides equitable and sustainable access to quality care and treatment for patients. With their help, she was able to access the life-changing treatments for a fraction of its original cost.

In addition to prescribed medications, treatment for UC also involves dietary modifications. Nishapa has had to dramatically change her eating habits, avoiding baked goods as well as items such as milk, butter, eggs and even mixed vegetable juices. 

Nishapa with family before being diagnosed with disease.

Nishapa with family before being diagnosed with disease. Photo Credit: Nishapa Leeleartkij

Finding a bigger purpose

While battling against UC, Nishapa  discovered a profound sense of purpose. Her success in controlling her autoimmune disorder and being able to access treatment spurred her to advocate for others facing similar barriers in accessing affordable, life-saving treatments in Thailand.

Currently 43 years old, Nishapa volunteers with I SEE U Contemplative Care, which offers emotional and moral support to patients in their final stage of illnesses.