Tatay J's Battle Against Myasthenia Gravis

Myasthenia Gravis (MG) is a rare, long-term neuromuscular disease, characterized by skeletal muscle weakness and rapid fatigue caused by a breakdown in the normal communication between nerves and muscles.

In retrospect, my father developed myasthenia symptoms in 2016 while he was visiting Christchurch. He developed (diplopia) double vision, ptosis (droopy eyelids) and acetylcholine receptor antibody positive. However, this was not picked up and he remained without formal diagnosis until February 2018 in the Philippines based on further presentation of diplopia and ptosis. He was commenced on single tablet of Mestinon (Pyridostigmine). He was symptomatically stable upon his arrival in Christchurch in October 2018.

After weeks of stay in NZ, he experienced deteriorating weakness thus he was admitted to Neurology, Christchurch Hospital between 11-16 December 2018. Treated with IV immunoglobulin, Prednisone and increased dose of Mestinon, after 5 days in the hospital, he regained his strength, swallowing is better but still with diplopia.

Three days after his arrival in the Philippines, 15 July 2019, he was admitted to the hospital for 13 days due to myasthenic crisis, and respiratory infection. Three months thereafter, last 19th October, he was hospitalized again with the same presenting symptoms. Today is his 11th day in the hospital. His initial treatment included antibiotics, Mestinon, and low dose Prednisone; followed with Methylprednisolone Pulse Therapy but eventually stopped due to its side effects and less significant improvement. IVIg was supposedly in the care plan but was deferred after good response when the doctor put him back to Mestinon and low-dose Prednisone. Slowly, he's regaining his strength, and droopy eyelids is gone.

His myasthenia, as explained by his doctor may take months to achieve complete remission.It will require long term management with steroid medication and Mestinon, until it is completely withdrawn. It also requires specialist supervision, may need to attend hospital out patient clinics and extended stay or hospitalization.

The battle against myasthenia gravis entails high medical cost. Treatment of this disease is higher than many other neurological diseases; hospitalization, the doctors' fees and the direct cost of medicines especially if with IVIg infusion. In Christchurch, my father's hospital bill was NZD 17,324.75 because he was holding a visit visa and did not qualify for free medical services. A big portion of the treatment was the IV-immunoglobulin infusion and the hospital was kind enough to arrange a weekly staggered payment for us. Back in the Philippines, all bills must be settled before leaving the hospital. Last July- we incurred more or less NZD10,000 -direct cost and external resource utilization.

While presently in confinement, we opted to buy the medicines outside which is cheaper and paid other diagnostic test and spent P 63,012.39 (NZD 1,970).As of the 28th of October, the hospital bill is already P 83,539.13 (approx NZD 2,600). The goal of this fundraising to help us settle the unpaid bills and prepare for the anticipated long term management including the Percutaneous endoscopic gastrostomy (PEG), in which a PEG tube is inserted directly to the stomach to provide food and medication. As a family, we are giving the best we can to make my father comfortable, and we are hopeful and want to want to see him live a happy life.