Klinefelter Syndrome Male: Joey Schiffman
By Kimberly Walker
As a child, Joey Schiffman was fascinated by cars; from the way, they looked, to taking them apart and finding out how they ran. Today, this 29-year-old man is working with the cars he dreamt of, while living as a Klinefelter syndrome male.
Early life and school as a Klinefelter syndrome male:
During his developmental years, Joey struggled with speech. He had difficulty with everyday conversation from the time he was a toddler. If he got excited or upset, he found he couldn’t communicate at all. Growing up in a bilingual home, his mother alternated between speaking Portuguese and English to him and his sister on a regular basis.
After seeing him struggle, his parents took him to a speech therapist. The therapist thought the dual languages may have been confusing their son, and he was having real trouble with the Portuguese. The doctor’s advice was to only speak English at home. Joey’s mother did, but learning issues continued throughout his school years.
Middle school:
He went to public school for elementary but switched to private school by middle school. During this time, he had tutors for speech therapy and math. Joey had a tough time retaining information, and would have to read things “two or three times to understand it”. Teachers worked with him; he had an IEP to help him get through and was given extra time to take tests. Though it was difficult, Joey found he was a hands-on learner who did much better with visual aids. He also discovered that once he learned something, it was “locked into my brain”.
When it came time for middle school, Joey’s parents chose a school geared towards students with special learning requirements. The Newbridge School had a unique understanding of special needs students and could work with the issues associated with being a Klinefelter syndrome male. He loved it. He did well, finding it was exactly the kind of atmosphere in which he could effectively learn. “They really work with students one on one,” he said. He had an IEP, which allowed him extra time for tests, and a note sheet to help him keep up.
Diagnosis of a Klinefelter syndrome male:
During a routine physical when he was around thirteen, his doctor noticed his testicle size was “smaller than the average ‘hitting puberty’ size.” Concerned, he sent Joey to an endocrinologist, who ran blood tests, and confirmed his suspicion that there was a problem; Joey was a Klinefelter syndrome male, also known as 47, XXY. Not a commonly discussed condition, the doctor began to explain what Klinefelter syndrome was.
Among other things, the doctor told him that he wouldn’t be able to have children. Joey took the diagnosis in stride. At that age, he wasn’t really thinking about kids, and the rest of it didn’t seem like it was that big of a deal. He thought, “it is what it is”, while the doctor was explaining what he had. His parents were more concerned and asked Joey to keep the information to himself. When the doctor explained some of the symptoms included language issues and learning disabilities, it “kind of made more sense” to Joey and his parents when it came to his early speech and learning troubles.
Treatment:
After the diagnosis, he began taking testosterone,
which is a necessity for a Klinefelter syndrome male. They put him on two gel packets daily, one on each arm. At first, it was “not a big deal, just kind of annoying”. The gel packets are alcohol-based, so when the area it’s applied to gets wet or sweaty, it gets slimy, which he didn’t like. He also didn’t like waking up every day, putting it on, and letting it cure. He started experimenting, and tried the foam pump for a month, but it was pretty much the same as the gel and he was unimpressed. Before long, he found the gel annoying enough that he would skip days and then start taking it again before doctor visits to raise his testosterone for the tests.
They also tested his sperm at sixteen and found he had a very low sperm count. The doctor told Joey the “percentage of him having kids was slim to none.” He was fine with that, he still didn’t want children. Just in case he changed his mind when he got older and found a partner, his father froze sperm for him so any future children would be within the family bloodline.
High School:
Newbridge only runs through grade eight, so Joey began another school for high school, and attended a more art-based high school. He really enjoyed the atmosphere and tailored his schedule so he could graduate six months early. Additionally, he had a special elective class that he spent with a tutor, who made sure he understood his assignments and kept him up with his class. This also was something for which he was credited.
An early love of cars:
Though he still worked incredibly hard to finish early, he recognized the part the school had in helping to create an atmosphere in which he could thrive. He kept his grades up and graduated with a B average. Socially, he did well. A cheerful kid who made friends easily, he loved being outside and was still talking about cars to whoever would listen. Because of this love of all things automotive, he had bonded early with a large group of friends who shared his passion. He attended car shows, races, and anything else to do with cars. In fact, his only complaint about his high school was that they didn’t have an automotive or metal shop to feed his passion.
College:
With this love of cars so deeply ingrained, Joey knew exactly what he wanted to do after graduation, and started working towards his goal immediately. He began at Mira Costa Community College in Cardiff in the Automotive Technology program. Not only was the automotive school considered a top-notch school, but many of his friends went there.
After graduating, he began working at a body shop as a paint prepper. Though he enjoyed the work, he found no path for advancement where he was working, and began looking for something else. Before long he was doing graphics on high-end cars. People were impressed with his work. At only twenty-two, he was already considered skilled in the trade. He met a body tech who told him about the certified BMW STEP program. With the completion of the program, he would be certified to be a painter or body tech through BMW North America.
Intrigued, he applied. Though he had an interview, they told him he didn’t have enough training to qualify, and guided him to Universal Technical Institute (UTI) for repair. They told him to reapply after he finished.
Pursuing his dreams:
Joey decided to pursue his dreams. In 2013 he moved to Sacramento and began UTI. Though it was only a year-long, the program was expensive, so his parents helped. Joey lived with roommates during this time, and enjoyed the social aspect of it. Unfortunately, he didn’t like the city of Sacramento. He still had a solid group of friends, many he had known from grade school, so he spent time escaping with them. He found himself doing fun things like snowboarding and skiing as often as he could. His parents encouraged and helped him fund it. They wanted him to enjoy his twenties.
Joey didn’t neglect his schooling, however, and remained focused on the BMW STEP program. Not only would he be paid while he trained, but only sixteen students are accepted yearly into the prestigious program. After finishing UTI, he applied again and was accepted at the Oxnard location. He did some traveling while he waited to start, spending ten days in Israel with his best friend, before returning and moving to the Channel Islands to begin his new school.
Pushing forward:
Joey had a roommate, and his parents helped with the rent. He covered the rest of the bills with what he was making. Since he was finished at one in the afternoon, he was hired to work for BMW part-time five hours a day. The learning was perfect for him. It was hands-on, one on one, technical training, and his class only had seven or eight students. In eight months, he graduated from the program and went to work for a BMW-certified auto shop.
Next steps:
After a few months at the shop in Murrietta, they ran into some financial issues and he was laid off. However, his skills landed him another job right away, where he stayed for a year and a half. This provided excellent real-world training, but did not fulfill the requirement that he be with a BMW certified technician to finish the STEP certification, so he again began job searching.
Before long he was hired on by Penske Automotive in San Diego under a BMW master and fulfilled his requirements. Financial issues hit again, and the shop had started to slow down, but they wanted to keep him on, so he was transferred to production. When the COVID-19 pandemic hit he was laid off. He began searching for a new job almost immediately, and landed a contract with Shift.com as a service advisor in Aug 2020.
Now after almost a year and a half, he loves his job and his life in the Carmel Valley area. He would tell anyone listening in regards to life and their own job, “Do what makes you happy, even if it’s not the most amount of money that you really want to make but you’re happy going to work every day and accomplishing what you want to do, that’s the main goal in life.”
Living With XXY:
Treatment:
Today, Joey has his testosterone under better control. He stopped the gel, and switched to Testopel. Twice yearly, a doctor makes a small incision, and inserts a pellet that lasts six months. He has found this works well for him, and has been doing it ever since. Recently, Joey switched to a different doctor who monitors his levels closer and wants to change his schedule to three times yearly. Joey is wrestling with the decision, and the American healthcare system in general.
His new doctor, though more thorough, is also more expensive. An extra pellet is also an added cost. He wants to “find a doctor who will give the information that I need but at a lower cost.” Joey understands the importance of self-advocating, and is learning more about the specifics of his condition, including what costs may be associated with it. He said he may end up doing shots for financial reasons, but is still exploring his options.
Dating and romance:
A late bloomer when it came to dating, Joey played the field for a few years. He says one of the key things he learned during this time about his own relationship with being a Klinefelter syndrome male is “that keeping it quiet does not really help anybody”. One day he had an epiphany, and realized “I’m not getting rid of it. What’s the point of hiding it? If somebody is interested in whatever disabilities I have, I might as well just be upfront with it.”
He felt if he got more serious with a girl, she should know what she was getting into regarding kids and what his condition entails. “Honestly, Keeping Klinefelter’s a secret didn’t really benefit me, anyhow. A lot of people nowadays are more welcoming to hearing people’s life stories and how they go about living their life.”
These days Joey is in a serious relationship. He met his girlfriend Ashley online, and they just talked on the phone at first. They took their time getting to know each other before they finally went on a date. It was a great night for both of them and by date two, she had met his whole family and he had told her about his KS. They’ve been together almost a year, and plan on getting married.
Advice for the community:
When asked what he wants to share with new mothers getting a diagnosis for their child, Joey responded, “your kid, or your son is going to have a hard time, especially with learning. It’s going to take them a little longer to learn, but be patient, because they will get it. And once they understand it they’re going to have it locked down and loaded…hands-on learning is your best friend.”
With upcoming plans of wakeboarding behind a yacht, a future proposal, and a job he loves, Joey Schiffman is proof that a Klinefelter syndrome diagnosis is just a small part of his big life plan.
If there are members of the community who want to ask more questions about Testopel, Joey is available.
DONATE
