Plight of persons with myasthenia gravis

By Ma. Teresa Montemayor

October 18, 2019, 1:51 pm

<p>(<em>Photo taken from the Myasthenia Gravis Samahang Pilipino FB page</em>) </p>

(Photo taken from the Myasthenia Gravis Samahang Pilipino FB page

MANILA -- Weakness of the whole body and drooping eyes prodded Marivic Joy Franco eight years ago to consult a health expert at the Philippine General Hospital.

Dati nakakapanahi pa ako ng mga costumes at madali ako makatapos pero nakaramdam ako ng panghihina lalo na kapag mainit kaya naisip ko magpatingin at nalaman ko na may myasthenia gravis (MG) ako (I use to easily sew costumes but one time felt weakness particularly when the weather is hot, so I decided to have a check-up and found out that I have myasthenia gravis) ,” Franco told the Philippine News Agency (PNA) in an interview.

According to the United States National Institute of Neurological Disorders and Stroke, MG is a chronic autoimmune neuromascular disease that causes weakness in the skeletal muscles.

Its symptoms include difficulty in breathing, swallowing, talking, climbing, jumping, and lifting things. It also results in having hoarse voice, drooping eyelids, double vision, fatigue, and facial paralysis.

The disease affects both men and women, but more on women under 40 years old worldwide.

Sabi sa amin ng doctor, mga neurologists, stress talaga ang trigger ng sakit namin. May kwento na ang unang nagkaroon ng MG ay mga (The doctors told us, the neurologists, that stress triggers the disease. There’s even a story that the first people who acquired MG are the) OFWs (overseas Filipino workers) probably because of stress, and MG is non-curable until now according to research,” added Maria Victoria Yap, another person with MG.

Apart from MG, Yap suffers from hypothyroidism. She finds it difficult to breathe and speak clearly after talking or chatting continuously for about an hour.

Napapagod din kami kapag salita nang salita. May mga iba sa amin na pumapayat din dahil hindi nahihirapan makalunok, makakain ganun (We easily get tired talking. Some of us lose weight due to difficulty in swallowing. Eating becomes a challenge),” she added.

Relation with other auto-immune diseases

Maribeth Portes, a single mother with MG, said they get easily infected and are prone to having another immune disease.

Lagi po kami nagsusuot ng mask kasi madali kami mahawaan ng ubo, sipon. Mayroon din po akong antiphospholipid syndrome [APAS], madali po lumapot ang dugo ko kaya umiiwas ako sa green leafy vegetables. (We always wear masks because we easily get coughs, colds. I also have antiphospholipid syndrome, my blood gets thick so I avoid eating green leafy vegetables),” Portes said.

Ang tinitira po sa amin ng MG ay ang diaphragm namin kaya mahalaga na madala kami sa ospital na may intensive care unit (ICU) para maisaayos ang aming paghinga kung hindi madali kami mamatay (MG attacks our diaphragm so it is important for us to be immediately brought to hospitals with intensive care unit so that we will not die from difficulty in breathing),” she added.

Treatment, medicines

Portes shared that Mestinon (pyridostigmine) is the main medication for persons with myasthenia gravis (PMGs).

“We take it five to six times in a day pero may isang member kami na sobrang mahina kaya 20 tablets a day. Lumalakas kami kapag nakakainom ng gamot, then, we're able to move and walk with ease (We take our medicine five to six times a day. But we have one member who takes 20 tablets a day because he’s so weak. We get stronger when we take the medicine then we're able to move and walk with ease),” she said.

However, the medicine gives them strength for four to six hours only.

Para po kaming cellphone na madaling ma-low battery, at ilang beses dapat uminom ng gamot, kaya nasasabi namin minsan na ang sakit namin ay sakit ng mayaman (We’re like cellular phones with batteries that get drained easily, and we need to take medicines several times, that’s why we sometimes say that this disease is for the rich),“ Teresita Alcantara, another PMG, said.

Alcantara added that they are also given steroids to help them relax and have appetite to eat.

“In moderation po ang steroids kasi pwede kami naman magkaroon pa ng isa pang sakit gaya ng diabetes (We take steroids in moderation because we can acquire another disease like diabetes),” she said.

The United States National Institute of Neurological Disorders and Stroke reported that removal of the thymus gland or thymectomy, an important part of the immune system in infancy and early childhood, is deemed the most effective treatment for MG since the 1940’s.

“Thymectomy with most patients, has produced improvement after 6 months to one year following surgery,” the institute said.

In her desire to overcome MG, Maria Fe Mabini underwent thymectomy on October 30, 2018.

Sa Lung Center kay Doktora Galvez ako nagpagawa kasi gusto kong lumakas. Laser lang kaya wala akong naramdaman at lumakas naman ako pero hindi po nagbago ang mga mata ko, still drooping (I had surgery at the Lung Center under Doctor Galvez because I want to regain my strength. It was laser surgery so I didn’t feel any pain and I became stronger, but my drooping eyes didn’t change),” Mabini said.

Meanwhile, Yap shared that most neurologists advise them to keep healthy and avoid stress at all costs.

Mayroon kami isang member na nagta-trabaho sa call center na bumalik sa paninigarilyo at ibang bisyo pagkatapos ng surgery kaya nanghina rin siya (We have one member who works in a call center, who became weak after surgery because he went back to smoking and other vices),” she said.

Duterte bares having MG

Last October 5, President Rodrigo Duterte revealed that he has MG during a speaking engagement in front of a Filipino community in Moscow, Russia.

"It’s a nerve malfunction. I got it from my grandfather. He also had that. So, I believe really in genetics. What he had, I got,” Duterte said.

Portes, who has lived in Davao for a long time, feels pity over Duterte’s revelation.

Mahirap talaga magkaroon ng MG, kung puwede nga lang akuin ang sakit niya, kasi mas marami siyang kinakaharap na stress bilang presidente natin. Nalungkot talaga kami kasi bilang may MG nauunawaan namin ang kalagayan niya (It’s really difficult to have MG, if I can only get the disease from him, because he encounters a lot of stress as our president. We were really saddened by the news since we have MG, we understand his situation),” she said.

On her part, Alcantara appealed to President Duterte not to pay attention to haters to avoid stress and get appropriate treatment despite his busy schedule.

Kapit lang po kayo, President. Nandito kami na mga ka-MG ninyo na nagdadasal para sa inyo (You can do it, President. We’re here, your fellow PMGs who are praying for you),” she said.

In a media forum on October 9, Health Secretary Francisco Duque III said that Duterte is "quite fit" for the job despite having MG, adding that he is able to handle well the "most difficult job on earth" at 74 years old.

"He is okay. He is able to do many things that media practitioners are not able to follow. He is going to visit wakes, visit soldiers and policemen in hospitals in different parts of the country,” Duque said.

Myasthenia Gravis Samahang Pilipino

The Myasthenia Gravis Samahang Pilipino (MGSP) is a non-profit and non-government organization established to reach out and help all PMGs in the country. It also aims to spread awareness about this rare auto-immune disease which potentially disables its victims

"Through advocacy, early detection and appropriate intervention, medical research, sustainable livelihood programs and other services we want to improve the lives of our fellow PMGs. To create a compassionate community, para malaman nilang hindi sila nag-iisa (So they will know that they are not alone) so they will feel empowered to live life to the fullest," Portes said.

"To date, we have estimated 500 PMGs nationwide according to our engagements in social media and to the number of people who contact our group from all parts of the country. Around 275 are listed and only 80 are active group members," she added.

Citing that studies on MG and its treatment are scarce in the country, Yap pleaded to the government officials to look into the situation of PMGs and help them acquire better health services.

"Sana magkaroon ng awareness, hindi biro ang may MG para malaman ng mga tao na kung may symptoms sila kailangan nila ng blood test, MRI, citi scan, antibodies test na magastos (We hope there will be an awareness, it's difficult to have MG. So if people have the symptoms they need blood test, MRI, CT scan, antibodies test which are expensive)," she said. (PNA)