Jaya's Fight with Rare Autoimmune Disease

This is story of a struggling 35 year old mother from Fiji, currently residing temporarily in Auckland, New Zealand with her relatives for her treatment.

About 18 months ago Jayashari, a young wife and mother of a 4 year old, began complaining of severe headaches for which she initially took pain-killers. The diagnosis was sinus and additional medication was prescribed.

However, her condition worsened rapidly. She began to get extreme pains in her limbs and body and felt very tired.

Her fingers and toes turned black as a result of dry gangrene due to vasculitis .

The doctors explained that they could treat no further in Fiji other than amputation. For this young wife and mother to lose all her fingers and toes - and not be able to fully use her hands and feet means serious loss of quality of life for her and a load on their small and extended family.

It was a solution too horrific for the family to contemplate and was a very traumatic decision for the husband to make and the family sought alternative assistance further afield and in July 2018 Jayashari was brought to NZ and admitted to Middlemore hospital for test and treatment.

Prior to July 2018 Jayashari was admitted to the Suva Private Hospital in Fiji for a week of tests.

The medical team tapped spinal fluid and the diagnosis came back as SLE. (Systematic Lupus Erythematosis.

The treatment was not available in Fiji for this condition. Jayashri was discharged from Suva private hospital as the hospital could not offer any more treatment and reported that she would need treatment in India for her SLE.

Within the span of two to three weeks following this diagnosis, Jayashari’s condition deteriorated rapidly as her fingers and feet started to turn purple, and she lost the use of all her limbs. She was immediately admitted at the (CWM) Government Hospital in Suva, Fiji. Jayashari was given medication (Heparin) which had to be bought from the private hospital and costed $120 per day as the government hospital in Fiji does not have supply of this medication. Given that the average wage in Fiji is $2.32(FJD) which is equal to approximately NZ$1.60 per hour, this was an unaffordable stretch for the young family. It became essential to seek treatment outside of Fiji.

However, as Jayashari was simply not well enough nor strong enough to make the trip to India where medical treatment are quite cheap but she had no support system at all in India.

We as her extended whanau (family) in New Zealand offered our support to get her, her husband and Jayashri’s mother to NZ to seek a treatment that would avoid amputation of her fingers and toes.

Upon her arrival, she was immediately take to emergency department of Middlemore Hospital in South Auckland. She was immediately assigned to team of specialist who retested and the condition was then diagnosed as autoimmune disease “Granulomatosis with Polyangitis”. Jayashari was admitted as a private patient for two weeks as she is not a resident of New Zealand.She was initially put on IV treatment of cyclophosphamide (which is also used in chemotherapy for cancer treatment) and prednisone which was required to limit further deterioration of her condition.

We are very thankful to the Middlemore team as they were very helpful and understood her financial situation and offered her further six weeks of IV treatment as outpatient. This drastically helped to lower her medical costs.

Since her condition is autoimmune and remittance is very high, she has been put lifelong medication which will require ongoing bloodtests every 2-3 weeks.

This is the most awful state to see another human being in, especially a young mother with a small child. She is in a foreign country without her child, without her husband who needed to return to Fiji to continue working and he is taking care of their child back in Fiji.

Jayashari is barely responsive and the medication has affected her sight and hearing. Bedridden, in pain and immobilised Jayashari has not walked for months and requires the full-time care of her mother in carrying out daily tasks such as bathing and eating.

However, we, Jayashari's family have not given up, cannot give up on our sister and daughter. It is still early days and much more is urgently needed if Jayashari is to regain her health and quality of life. Her husband is to regain his wife and her son is to regain his mother.

We need to ensure for now, that Jaysahari's treatment is continued and responded to immediately if anything changes. The continuation of blood tests means Jayashri’s family would have to fork out approximately $150FJD every fortnight since these tests are not Fijian Government funded.

This is critical, because on the auto-immune supressant tablets, her body is still vulnerable to infections.

People have been asking us how they can help Jayashari and how they can support us.

We want you to know that all funds raised will solely go towards Jayashari's recovery, the management of her auto-immune disorder and her family's expenses.

Any expenses that we and our supporters incur (e.g. our own travel and accommodation expenses etc) will be covered by ourselves.

Jayshree is in critical condition and there are still risks that could impact her condition and quality of life further.