A local pastor has written a book and spoken publicly about his living with a rare medical disorder so he can share with others what he has learned about the disorder.

And, he also shares the importance of the right perspective, the loving support of others and the grace of God in bearing up under suffering.

The Rev. Steve Henry, 41, pastor of Victory Heights United Brethren Church, was diagnosed at age 12 with Marfan Syndrome, a rare disorder that can cause very serious health problems.

Henry said this week after a talk to the graduating class in Amy Kline's practical nursing program at Venango Technology Center that by telling his story, he might also "be able to help a family who may suspect someone has the disorder, a child, who might be helped by an early diagnosis."

Henry has given the talk to 13 of Kline's graduating classes.

Henry told the nurses that writing his book, which is self-published and sold on Amazon, was also a way for him to remember the details of his life because "the massive medical procedures, the trauma and the drugs have badly affected my mind - I have a hard time remembering things."

And Henry has a lot of medical details to remember. Originally from Knox, he was diagnosed with Marfan Syndrome at age 12. He has had 29 years of experience in living with a genetic disorder that effects all the connective tissue in the body, which means the syndrome can cause problems in the heart, blood vessels, bones, joints, and eyes.

Henry said he has had "23 years of surgeries," surgeries which include eight aortic procedures and one brain operation. His entire aorta is now artificial, having been fortified internally, over the course of many surgeries, with a total of five pieces that run the entire length of his approximately 18 inches of aorta.

All about perspectives

Henry's message to anyone who has serious health procedures is "it is all about perspective." And the one over-arching perspective he shares is that he believes God had a reason for all that he has gone through.

But Henry told the nurses that it is also important that they try to understand the perspectives of the patients. "The way that you talk to patients is very important. First of all, we are not patients--we are people," said Henry. "I have an incredible support system. My wife and family are amazing, my church has been outstanding.

"But a lot of people don't have support, and you may be the only encouragement, the only glimmer of hope that will get your patients home."

Marfan Syndrome's effect on life

Henry's description to the nurses of his health problems and medical experiences indicates that Marfan Syndrome has played a large role in his life. When he was diagnosed with Marfan as a boy, Henry was told he could not play sports because exertion could damage blood vessels and other connective tissues.

"I remember sitting on the bleachers and crying," said Henry, who attended Christian Life Academy in Cranberry in his teens. "I loved sports, and I wanted to play basketball," he said.

Henry's height of 6 feet, 9 inches, one of the effects of Marfan Syndrome, meant he would be a great player, but he was only allowed to help out the team in non-playing jobs.

Two of Henry's five children also inherited the disorder, and Henry said he knows from his own experience that the "peer pressure on my two sons to get into competitive sports will be great, because sports, sadly, is like a god to so many people and their lives are engulfed by it."

But being restricted in playing basketball was only the beginning of the difficulties that Marfan would introduce into Henry's young life.

Marfan Syndrome can lead to aneurysms, a bulge in the blood vessels, and since he was diagnosed, Henry has had several in his aorta.

At age 18, because of an aneurysm, he had already had an aortic valve replacement. This occurred after a year as a student at Kentucky Mountain Bible College, where he played basketball "informally" with friends.

After graduating from the college, he and his wife, Amanda, originally from Ohio, went as missionaries to Papua, New Guinea, to help establish radio stations. There he also played basketball and developed another aneurysm. That aneurysm led to a Triple A (abdominal-aortic aneurysm) in 2003.

In 2008 and 2010 Henry had two more triple A procedures, and he emerged from the one in 2010 with a new aortic artificial valve, called a St. Jude's valve.

In 2016, Henry had a dissection, a serious medical event in which the aorta tears, and which can lead to death.

This year Henry has had four procedures in the four weeks of May, including another open heart surgery for an aneurysm. It was after these last procedures that the replacement with artificial pieces of Henry's entire aorta was complete.

Henry's message

One of the messages that emerged from Henry's talk was that physical exertion can lead to serious health problems with those with Marfan Syndrome. Playing basketball played a role in two of his aneurysms and the 2010 aneurysm took place after Henry shoveled snow.

Another message that emerged was the importance of his wife, Amanda, and others who supported him, in getting him through his sickness and recovery.

"Amanda is incredible," Henry said. After his dissection, Henry was in the hospital for a long time, during which he was also intubated. "Amanda was there the whole time. I think it is actually harder for the caregivers."

Though he has had a few bad experiences with medical staff, Henry praised most of the medical people who helped him. After his dissection, he had to learn to walk again, for instance, and Henry said the physical therapist who worked with him made him believe he could.

"I did not think I could do it," he said, "but with firm and encouraging words, she got me walking again."

His church, where he has been a pastor for 11 years, has also been tremendously supportive, said Henry.

And he spoke with gratitude of Jane Richey of Franklin, who helped him and his family in 2003 by giving him a part-time job on a radio station that Richey operated.

The ability to overcome suffering and anxiety was yet another message, because Henry's procedures caused him a great deal of pain and he now faces medical procedures with "a lot of anxiety."

With the dissection, Henry said he knew he faced two possible results - either he would die or be hospitalized a very long time.

But the message Henry said he most wants to communicate is the one that became the theme of his book, "Custom Scars." The message is one of God's helping hand in all of this.

He told of instances that he and his family concluded were miracles: in his 1997 procedure the doctors took three liters of fluid from around his heart. "They told me," said Henry, "that they had never seen this much fluid. 'It should have stopped your heart,' they said."

His 2010 ambulance drive to one hospital and then a flight to Allegheny General Hospital in Pittsburgh took place in a blizzard, but he made it through.

In 2016, when his aorta tore, the emergency room staff was supplemented that day by a cardiologist from Erie, "who would not normally have been there. He was there at the exact time and on the exact day that I came in."

Henry believes that if the specialist hadn't been there, the staff at the emergency room might not have responded quickly enough to save his life. But this doctor, Henry recounted, heard the words "dissection," "back pain," and "Marfan Syndrome" and said, "Call the helicopter" to fly Henry to Allegheny General.

Henry started "Custom Scars" after his 2010 aneurysm, when he decided "that I could trust that God could use my story."

Henry said that "Though your scars may be different from mine, I want people to know that we all have scars, and God has a purpose for all of us regardless of our 'custom scars.'

"I also want to bring out the value of life, that we are fearfully and wonderfully made. My dad used to customize cars, and that gave me the idea. I thought, I am unique and as perfect to God with my scars as my dad's custom cars were perfect to him."

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