Monica Richard gives voice to brother’s story

It began with the consumption of pork from a food vender that gave Lenine Sequeria a terrible headache that ultimately sent him to visit three different hospitals with health concerns.

According to Globe Magazine, Sequeria lived in Cape Verde “where he worked as a driver for the Ministry of Health.” Sequeria was constantly “on the go (and) eating on the road” while he traveled and consumed a lot of pork, said Sequeria’s sister Monica Richard.

In the spring of 2016 when Sequeria moved to New Bedford, MA, he began to experience terrible headaches that interrupted his sleep. Days later he felt “nauseous (and) numbness in his limbs, (experienced) blurry vision, (trouble) speaking properly and (waves of) confusion,” said Richard.

One day Sequeira was home with his mother when he experienced a whirlwind of these symptoms and his mother thought “he was having a stroke because he could not talk” correctly and “his body was shaking,” said Richard. The paramedics were called to bring him to New Bedford hospital.

According to Sequeria’s sister, St. Luke’s Hospital in New Bedford was “not sure” what illness or disease Sequeria had or why he was experiencing specific symptoms. From there, Sequeria was sent to a hospital in Rhode Island. There, Sequeria was diagnosed with tapeworm.

Tapeworm can exist in pork. Another interchangeable term is known as “Taenia solium,” which translates to pork tapeworm, according to Globe Magazine.

Pork tapeworm is common in “South and Southeast Asia, South and Central America, and sub-Saharan Africa, including Cape Verde,” where Sequeria lived before he moved to the United States, according to Globe Magazine.

Tapeworm is “a chain of organisms, connected, one to the next, by ropy lateral nerves” and obtains “no brains, no hearts, no mouths, and no guts,” said Globe Magazine. In order for a tapeworm chain to affect a person, the chain grows “suckers and hook (that) anchor (themselves within” a person, or in this case Sequeira, said Globe Magazine.   

The next step involved with being infected by tapeworm is a bank of egg sacs detach themselves from the chain and burst, causing the eggs to spill out in a person’s body.

According to Globe Magazine, in order for the eggs to hatch they “must be swallowed (either by) a person” or a pig. From there, the eggs that lay in the human “bore through the intestinal wall and go into the bloodstream” and eventually spread throughout the body.

Once Sequeria became informed with his diagnosis, his family connected the dots starting with the food, specifically the pork, he ate in Cape Verde, which turned out to be the root problem. The family was in a state of “shock (and) denial,” and questioned how the food is treated in Cape Verde, said Richard.

The family knew that tapeworm existed and thought it could be treated quickly and easily, but they were not aware of “how long (the tapeworm) lived in (Sequeria’s brain,) or how serious the illness was and the consequences or damage” it would cause Sequeira, said Richard.

The hospital in Rhode Island prescribed Sequeira with medication, but because the prescriptions were extremely expensive Sequeria’s family could not afford them. Without the proper medication to help treat Sequeria’s tapeworm he experienced a “seizure less than 24 hours” later, said Richard.   

When Sequeria’s symptoms worsened, his family took him to Mass General Hospital where he was admitted and underwent tests to “figure out what (the doctors could) do (to help) my brother,” said Richard.

The medical staff at Mass General “immediately took the burden on themselves (to) provide everything (Sequeira) needed to get through the treatment,” and luckily a “few weeks later (he) was allowed to leave the hospital, but he did not leave empty handed. (The hospital made sure he) left with the proper medication,” continued Richard.

Sequeira and his family are “forever grateful” for the “the care (and) the love” Mass General provided,” said Richard.

Since 2016 when Sequeria was diagnosed with tapeworm, “it has been challenging. In the beginning it was tough. He experienced depression when he realized it was a long term condition and he was not able to live a typical lifestyle of driving, going to work and (engaging in) social interaction. He isolated himself. (He) wanted to give up, but (Sequeria’s) family talked to him” and motivated him to keep fighting, said Richard.

As a result of experiencing confusion, his “brain (could not) focus” and Sequeria had a difficult time taking his medication, so his sister Monica used “sources, such as friends and family to help (her) organize the medication” and make sure Sequeria was taking it, said Richard.

As of recently, Sequeira “is not 100 percent healthy, but the treatment is so good because it is sufficient enough to (give him) a little bit a (of his life back). He can work, he can drive (and that) takes off burdens of other family (members). He is more cautious of what he eats, drinks and (prioritizes) his medication” said Richard.

For an extremely long time, Sequeria’s sister Monica lived “with (her) brother’s disease more than anybody because (she) was there the most (to support him). (She) was his voice when he could not advocate for himself until the treatments started to go into effect,” so when she found out Globe Magazine was covering Sequeria’s experience with tapeworm “it was like (she) won the lottery,” said Richard.

Sequeria “is living proof of how (tapeworm) can impact people” and by spreading awareness about tapeworm Monica hopes it will make people “more aware of their health (in order) to prevent the illness” or seek help quickly if symptoms become apparent, said Richard.