When Ray Kohn began feeling ache in his knees and elbows in 2015, he attributed it to his paintings as a stunt motive force and mechanic.However because the years went on, he started to note his frame converting in abnormal tactics: His head grew such a lot that he wanted a bigger helmet, and his palms was so large he needed to have his marriage ceremony ring resized thrice. His voice modified. His tooth shifted in his mouth, developing an underbite. He received over 100 kilos in spite of his extraordinarily energetic way of life, and he was once repeatedly hungry it doesn’t matter what he ate. In the meantime, the ache in his knees and elbows persisted. Cortisone photographs, supposed to cut back irritation and ache, by no means lasted lengthy. In 2019, he had the primary of 3 knee surgical procedures. Later, he’d have operations on his elbow. Not anything labored. No physician he noticed had a solution — at the same time as knee ache compelled him to hang to the wall to stroll. “I used to be falling aside, and I did not know why,” Kohn, now 47, stated.Having a look at movies from previous stunt paintings confirmed the level of the adjustments.
“I used to be like ‘Glance how a lot I modified. I am not rising previous. I am in truth reworking.’ Why is that this taking place?” 
Ray Kohn.
Ray Kohn
Within the fall of 2022, Kohn went to a dermatologist after noticing traces shape on his head. The physician requested to look his palms and commented on their dimension. Then, she checked out his tongue, eyebrows and different facial options, and despatched him for blood exams that discovered he had abnormally top hormone ranges. The ones effects despatched him to look Dr. Divya Yogi-Morren, an endocrinologist with Cleveland Hospital who makes a speciality of pituitary sicknesses.”I went into the health facility room and I took one have a look at him and I already knew what he had, simply from having a look at him and shaking his hand,” Yogi-Morren advised CBS Information.She fetched her coworker, Cleveland Hospital neuroendocrinologist Dr. Varun R. Kshettry, with whom she normally sees sufferers, as a result of she knew his experience would even be wanted.
Yogi-Morren and Kshettry stated Kohn had the medical options of a illness known as acromegaly, a unprecedented sickness that reasons the frame to supply an excessive amount of human expansion hormone. The illness is regularly led to by way of a tumor at the pituitary gland, and mind surgical treatment is the primary line of remedy. Wrestler Andre the Massive, who died of congestive center failure at 46, additionally had the situation, which reasons cardiac headaches. “They stated ‘If you do not get this from your mind, you’ll die. That is going to kill you,'” Kohn recalled. “And the very first thing that I requested was once ‘Can I nonetheless stunt-jump after this surgical treatment?'” What’s acromegaly, and the way is it handled? Acromegaly is a hormonal situation that happens if in case you have an excessive amount of human expansion hormone, stated Dr. Alice Levine, an endocrinologist at Mount Sinai who research acromegaly. Levine was once now not excited by Kohn’s care. Other people want massive quantities of the hormone as a kid, however adults want much less of it. Extra human expansion hormone is normally led to by way of an differently benign tumor at the pituitary gland. An MRI discovered that Kohn had this sort of tumor: His scan discovered a nine-millimeter mass, just about the similar dimension because the 10-millimeter gland.In an individual with acromegaly, human expansion hormone additionally is going to the liver and binds to receptors there, Levine stated. That procedure elevates a distinct hormone, known as IGF-1, which regulates expansion and metabolism within the frame. The ones two hormones blended resulted within the signs Kohn skilled. Portions of the frame, particularly bones, simply continue to grow. An individual with acromegaly may even enjoy fluid retention, cushy tissue swelling and different inner problems like pre-diabetes, cardiovascular headaches and respiration problems like sleep apnea. Different hallmark signs come with the embossed traces within the head, massive palms and expansion between the tooth — all signs that Yogi-Marren and Kshettry in an instant identified in Kohn. “He had the entire signs,” Yogi-Marren stated. “He had a symptom in virtually each and every device.”
It took just about 10 years for Kohn to be recognized and handled for acromegaly. All 3 medical doctors advised CBS Information that this is not abnormal. Yogi-Marren estimated that there is normally a “diagnostic extend of about six to ten years.” Kohn stated he was once relieved to after all have a health care provider who may inform him what was once mistaken. Acromegaly will also be laborious to diagnose on account of the number of signs, Kshettry stated, and Yogi-Marren stated sufferers would possibly now not notice simply how a lot their our bodies are converting.
A three-D representation evaluating a person with acromegaly (left) and the similar wholesome guy (proper).
KATERYNA KON/SCIENCE PHOTO LIBRARY
“From the scientific facet, acromegaly is a type of diagnoses the place it takes a village,” Kshettry stated. “It is not one uniqueness that may truly lend a hand those sufferers. We depend on neurosurgery, endocrinology, ear nostril and throat, dermatology, sleep drugs, orthopedics, dentistry, cardiology — most of these issues. We want the experience to come back in combination to very best maintain sufferers.” In maximum sufferers, as soon as the tumor at the pituitary gland is got rid of, the surplus human expansion hormone manufacturing stops. That then stops the overproduction of the second one hormone as neatly. Surgical procedure carried out by way of an skilled surgeon works about 90% of the time, Levine estimated. If surgical treatment does not paintings, an individual can go through radiation or use medicines to shrink the tumor. The situation can recur, Yogi-Marren stated, so medical doctors normally have common follow-ups for a number of years to verify hormone ranges are commonplace and that there is no new tumor expansion. Treating the stipulations led to by way of acromegaly is a distinct tale. Whilst such things as cushy tissue swelling might be reversed as soon as the surplus hormones forestall, adjustments to the bones and different portions of the frame cannot be undone. An individual with acromegaly would wish to go through corrective surgical procedures to regard the ones accidents. Getting again to commonplace lifestyles after surgical treatment Kohn stated that he was once used to risking his lifestyles in bad stunts and has “stared loss of life within the face more than one instances,” however the thought of mind surgical treatment had him “scared to loss of life.” It felt extra horrifying than earlier operations, he stated.
“The very first thing I requested was once can I nonetheless (do stunts) after this mind surgical treatment, they usually stated ‘Sure, you’ll be able to are living your lifestyles identical to you’ve got by no means had surgical treatment in any respect,” Kohn stated.Figuring out it was once his most suitable choice, he confronted his worry and underwent the 8-hour operation in June 2023. 
Ray Kohn in 2024. He stated he has misplaced weight however remains to be making plans to go through surgical procedures to fix injury led to by way of the illness.
Ray Kohn
Restoration was once painful, Kohn stated, however his high quality of lifestyles has larger immensely since. He has misplaced over 100 kilos in a little bit over a yr. His follow-up appointments were certain, Yogi-Marren and Kshettry stated. Most often, they ask a affected person to attend a couple of yr after the preliminary surgical treatment to start out operations to regard lasting bodily stipulations. Kohn has handed that mark and expects to have a double knee surgical treatment and an operation to fix his jaw within the close to long term. Kohn stated that he is additionally spoken to the dermatologist who despatched him out for added trying out, and thanked her for serving to save his lifestyles. He has additionally been ready to take part in more than one stunt jumps that untreated acromegaly would were unimaginable. Doing that, “I felt reborn,” Kohn stated. “You understand, I had one thing taken clear of me that I are living to do, that I like to do. To get again within the automobile was once very particular.”
Extra from CBS Information
Kerry Breen
Kerry Breen is a information editor at CBSNews.com. A graduate of New York College’s Arthur L. Carter College of Journalism, she up to now labored at NBC Information’ TODAY Virtual. She covers present occasions, breaking information and problems together with substance use.
