Health

On Rare Disease Day, Black Families Use Their Stories to Empower Others

It was about 10 a.m. about six months ago, Aug. 18. Jamie and Tonya Nash and their two sons were in class and at work inside their house in Newnan, Georgia, a suburb of Atlanta.

It was a scene being played out in millions of homes across the nation as the days of the coronavirus pandemic wore on. But, as if the international quarantine wasn’t enough, the life of the Nash family was about to take on a whole new dimension.

Their older son, Daniel, 13, was at his computer in the dining room and their youngest son, Nicholas, 7, was at a desk in the kitchen. Nicholas, a good-natured, warm and jovial son who loves to sing and record himself playing with toys, was playing around as Mrs. Nash chided him, encouraging him to focus on a worksheet.

“I was explaining to him what he needed to do, and he was just being silly and grinning, and I was like, ‘Boy, look, do this work and you can have a break. You’re taking away from your break time over here playing.”

Just as she thought he was about to focus, something strange happened.

“All of a sudden his head dropped down and I thought to myself, I know this boy ain’t going to sleep. So, I pulled his head up and I said, ‘Boy you better wake up. What are you doing? And then when I pulled his head up, I could see his eyes. They were rolling around and moving fast.'”

Mrs. Nash, who has a master’s degree in public health, recognized immediately what was happening.

“I knew it was a seizure. But the mama in me was like, ‘This is not happening. What is going on?'”

She grabbed Nicholas with one hand and her phone with the other and was trying to dial 911, but she couldn’t get the number right as she struggled to balance. So, she cried out for her husband, Jamie, who was in the bedroom teaching an online JROTC class.

The Nash family story is harrowing and emotional even as she recounts it. But they are telling their story anyway as Sunday, February 28, the last day of Black History Month, has been designated as Rare Diseases Day by the National Organization of Rare Diseases (NORD). Though their situation is more unusual than most, they are hoping to impart awareness to other Black families who may have to deal with rare conditions like epilepsy.

“It was very scary. He had never had a seizure before. So, we called the ambulance, and he went to the ER and they told us that, because he had no history of seizures, this would probably be the only one that he’ll have,” she said.

Even after Nicholas was over the seizure, his regular health care provider reiterated the next day that it was not clear what had happened, but he should be fine. That was not the case. “Five days later we found him in the bathroom where he’d had another seizure.”

As is typical of the days of COVID, only one parent was allowed to go into the hospitals or doctors’ appointments with Nicholas. After the second seizure, Mrs. Nash took him to the Children’s Hospital of Atlanta. There he was diagnosed with Epilepsy, put on medications, and was told he needed to see a neurologist for an electroencephalogram (EEG) — which is a test that detects electrical activity in the brain.

Both of their sons began showing signs of autism when they were 2 years old. But the Nashes had learned to manage two autistic children. Medical science sometimes connects autism and epilepsy — both being neurological disorders — but, given the advanced ages of their sons, there was no reason to believe either would be diagnosed with Epilepsy. So, the Nash family had begun a mysterious journey; not knowing that an even greater shock was on the way.

“When we had the EEG done, we weren’t expecting results right away, but the neurologist looked at the results and she said, “‘I’m going to tell you this. Your EEG results are extremely abnormal,’ which blew me away because I did not expect her to say that. She said the way his EEG looks; it doesn’t look like someone who just started having seizures.”

Ultimately, the diagnosis was confirmed. Nicholas not only has epilepsy, but he has an extremely rare kind of epilepsy, called Lennox-Gastaut syndrome (LGS). It is a form of epilepsy that usually becomes apparent during infancy or much earlier childhood, “usually before the age of 4 years,” according to the National Institute of Health (NIH).

“That was devastating to hear to put it lightly,” said Mrs. Nash. “Since the diagnosis, our son has had different types of seizures and they were pretty much unexpected as to when they would happen. They would randomly happen.”

They can occur at any time, even the most inopportune times: “He had a seizure on his birthday, he had a seizure on Thanksgiving, he had a seizure on Christmas and multiple seizures during the Christmas break,” his mother recalls.

The diagnosis has changed their lives astronomically.

At first, the seizures mostly happened in the morning; then started happening in the evening.

“So, whenever he’s up, we’re up. We’re watching him like a hawk because there’s been a couple of times that he’s had a seizure, and no one was around him and we found him. We had to put cameras all over our house so that, God forbid, if he had a seizure, we’d at least be able to see what happened and if there was a trigger, what kind of seizure he had, and how long it lasted. He will need monitoring constantly for the foreseeable future until we get things under control.”

In addition to assuring that their home is safe for Nicholas, they are also working closely with his school system to make sure he has the accommodations needed to maximize the quality of his education.

Lorraine Newborn-Palmer, a member of the African American Professional Advisory Board for the Epilepsy Foundation (EF), says the increased education about seizures in the Black community is crucial.

“As an ethnic group, conditions such as epilepsy are being discussed more often in the context of historical backgrounds and now in the face of an ongoing epidemic,” says Newborn-Painter, clinical program manager for the Sandra and Malcolm Berman Brain & Spine Institute. “We, as nurses, recognize the increased importance of education about seizures and epilepsy that cannot be overlooked. Forging ahead in this ever-changing health care environment has become even more of a challenge.”

Fortunately, Tonya Nash immediately recognized Nicholas’ first seizure. But there are multiple kinds of seizures, all of which appear different. Here are a few of the most important facts about African Americans and seizures, according to research by Thometta Cozart, a Master of Public Health and representative of the Epilepsy Foundation (EF) who facilitates the EF’s mini-grant program:

· African Americans are more likely to be diagnosed with epilepsy than Caucasians; they more often experience status epilepticus, a medical emergency in which a seizure continues for 10 minutes or more without stopping; and they are at increased risk for Sudden Unexpected Death from Epilepsy (SUDEP).

· For many African Americans with epilepsy, access to appropriate care is a central problem. But even more damaging than issues of medical care can be the fear, misperceptions and discrimination imposed by people who don’t know the truth about epilepsy — that it doesn’t define a person, it’s just a medical condition. Education is the key to changing attitudes and encouraging those with the condition to seek proper care.

· More than 578,000 African Americans are living with active epilepsy in the U.S. and more than 25,000 new cases are diagnosed each year among African Americans in the U.S.

· African Americans are more likely to experience a medical emergency in which a seizure continues for 10 minutes or more without stopping. A free Seizure Recognition and First Aid certification training will help a care giver to recognize and administer efficient first aid. Information on this training can be found at www.epilepsy.com/firstaid.

Among the most important facts to be known is that there is always hope as research continues. Despite the difficulties over the past six months, the Nashes remain a healthy and happy family. Tonya and Jamie will be celebrating 18 years of marriage in June.

Of Nicholas, Mrs. Nash concludes, “In spite of all the seizures, our son continues to be a lovable, happy and resilient little boy!”

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