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SALT LAKE CITY -- At Personal Mastery Martial Arts, Matthew and Abram Iman have earned their first degree black belts in Tae Kwon Do. The brothers are very physical and strong for their age. Scholastically, both are "A" students.
Abram turns ten this month, Matthew is seven years old.
They're normal kids right where they should be except for one major obstacle.
The brothers have advanced prematurely into puberty. In fact, Matthew was going through it at age five.
The brothers have what is called Congenital Adrenal Hyperplasia or CAH. Because of a missing enzyme, the adrenal gland can't follow the normal pathway that helps develop puberty at an appropriate age.
- Affects boys and girls.
- Patients lack an enzyme that the adrenal gland uses to make the hormones cortisol and aldosterone.
- The body produces more androgen, a type of male sex hormone.
- Causes male characteristics to appear early or inappropriately.
- Causes children to grow taller than average.
- About 1 in 10,000 to 18,000 children are born with it.
National Institute of Health researchers are intrigued with the Iman case because they suspect something unusual may be going on with Matt and Abe's chemistry. Is this a variant of CAH they haven't seen before?
Maybe --maybe not.
In any case, despite current hormonal treatments, the boys continue to grow.
"When I look in a mirror I see that my biceps are bigger," Matthew said.
Looking back when her son Matthew was younger, Diane Iman says "when he was first diagnosed, they did an x-ray of the hand to identify bone age. Matthew's bone age was twelve and a half at age five. He had the pimples. He would blush when we would talk about girls, and he had body changes as well. That's a scary thing when you're a five year old in the body of a thirteen year old."
At age seven, Abram also had the bone age of a thirteen year old.
For both brothers, this part of their metabolism must stop before they reach the age when they really should be going through puberty. That may require a costly injection called Lupron, every three months, which the Iman's hope the NIH will administer as part of its clinical study.
"It's a very thick serum they will be given in their legs and it will, in effect, stop their puberty," said the boy's mother, Diane Imam.
The Iman family left for Washington D.C. earlier today. The brothers will be spending time at the NIH labs while researchers there try to find out if their case is unique.
At home, school or anywhere, Abram and Matthew have to watch each other. If their body chemistry gets too far out of whack, the boys require an emergency shot to prevent adrenal failure.
As the boys recall, this imbalance has occurred once with Abram and twice with Matthew. When it happens, they experience tiredness and sometimes continual vomiting. The breakdown is life threatening if not reversed immediately. The Imans, along with other parents of CAH children, are planning to petition the government to require that paremedics operating within the residential areas of CAH children carry the emergency shot on their emergency vehicles.
For the most part, Matthew and Abram will have a long healthy life, but they know they've got to take a regimen of medications to keep CAH under control.
"Yes, our sons have the disease but they're kids. We want them to do the things kids do," said their father, Kyle Imam.
And that's exactly what Matthew and Abram are doing right now --savoring boyhood.
CAH occurs in about one in 15-thousand births. With special testing, most cases are now diagnosed at birth.
Email:eyeates@ksl.com
