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Press Releases are separated by their titles in blue text. The most recent release will be the last in the series.
Great interview on Central Precocious Puberty - To view click here http://dynamic.wjla.com/watchvideo.hrb?s=wjla&id=2267
Growth Disorders are More Common than Perceived
For Immediate Release:
June 18, 2005
According to the database P.O.S.S.U.M., there are in excess of 600 conditions which correlate to a search for growth disorders. The bulk of these disorders occur with much more frequency than parents of young children, or the general public understands.
Accurate statistics are almost impossible to obtain regarding the majority of growth disorders. Very few long term studies have ever been conducted to review children’s growth at all much less over a significant length of time. This factor is important in determining the true numbers of children impacted by growth altering medical conditions. This is due to the fact that some disorders are masked for years, before the evidence is so strong that a medical problem is finally identified.
However, some rough statistics are available to help us consider this issue. For example:
* Growth Hormone Deficiency: occurs in an estimated 1out of every 2,000 children born each year.
* Turner Syndrome: occurs at an incidence rate of 1:2,500 births according to the National Organization for Rare Disorders, although other groups report this figure with somewhat greater frequency.
* Klinefelters Syndrome occurs 1:600-800 boys
* Triple X Syndrome occurs 1:1,000 – 2,000 females
* Congenital Hypothyroidism occurs 1:5,000
* Congenital Adrenal Hyperplasia occurs 1:25,000 children
* Russell-Silver Syndrome: occurs 1:100,000 births (Other sources estimate this incidence rate to be much more common. Dr. Manbir Singh
states an incidence rate in the U.S. to be as frequent as 1:100 births but we cannot confirm this data).
Still other disorders such as McCune Albright Syndrome have absolutely no incidence reports that we can locate anywhere. The figures for this disorder are guess-timated to be less that 400 in the United States only. To date, MAGIC has in excess of 140 patients databased with this specific disorder; therefore we believe the incidence to be somewhat higher.
With the approximate 600 varieties of growth disorders reported by the POSSUM database, the accumulation of children with growth disorders of some type may potentially be very large despite it’s official medical classification as “rare”.
One of the few recent studies available which did produce some true data was reflected in an article titled: Growth Failure and reported on emedicine.com
“Title: Growth Failure Frequency:
In a nutshell this article states that out of the 79,495 children in the Utah study;
In a nutshell this article states that out of the 79,495 children in the Utah study;
555 (.7%) were classified as short stature with a slower than “average” yearly growth.
Out of this population of children; 205 children (37%) were found to have short stature by way of family genetics such as late bloomers (constitutional growth delay etc.).
› 55 (10%) were experiencing growth failure from other medical causes,
› 28 (5%) were classified as having idiopathic short stature, (which means they cannot classify
the specific cause as of this study date)
› 16.65 (3%) were found to have GH deficiency,
› 16.65 (3%) were identified with Turner Syndrome, (1:4,747 which significantly varies from other studies reported in more diverse populations as reported by the National Organization of Rare Diseases-NORD and the Turner Syndrome Society)
› and 28 (0.5%) were found to have hypothyroidism despite newborn screenings for this disorder designed to “catch” these children before brain damage and other serious effects are exhibited.
That is a total of 144+ children (not including those diagnosed with idiopathic and potentially still more numbers of children’s diagnosis) who had undiagnosed medical issues affecting their physical growth. Arguably this is a small portion of population as compared to the 79,465 children. But what if one of those 144 were your child? How important would it be then?
And as the list of disorders which could be screened for via studies of the population of children expands, so should the frequency of growth disorders increase. So exactly how common are growth disorders? No one really knows.
Why are growth disorders not considered a serious issue among the general public?
• People are much more comfortable believing that their child will eventually catch up rather than to suspect a problem.
• Girls are generally not scrutinized as closely as boys regarding their height. And therefore, less often suspected of underlying medical problems.
• Economic factors may be more pressing in urgency as compared to something “just affecting growth”
• Generally people do not fully comprehend that the height issue is truly not the important issue, it is simply the visible issue. The most important factors are the impact to the lungs, heart and other “non-visible” yet life altering strengths and functions.
The discrepancy between male and female identification is not known. It is socially more acceptable for females to be smaller than their same sex peers as compared to males. Therefore, one can assume that the identification of females with underlying medical conditions affecting their growth may be much more at risk than the vague data currently available.
The identification of children may also be impacted by socio economic factors as well. When a family has to struggle to put food on the table, they may not be able to afford the more nutritional foods demanded by a child’s growing body. Or this family may not be able to afford medical intervention to identify a harmful medical condition until it is dramatically evident and possibly too late for successful medical intervention. Therefore, the statistics on this person actually having a medical condition would never be included in a short term study of affected people. The frequency / incidence rate would not be accurate without a long term study of an economically, gender balanced and racially diverse population.
Why is recognition of underlying growth disorders so vital?
Conditions affecting children’s growth includes a barrage of factors ranging from simple nutritional issues to life threatening brain tumors. Early identification is crucial to minimizing the damage of the core problem what ever it may be.
The article mentioned previously went on to state;
“Mortality/Morbidity:
• Short stature has been shown to have far-reaching effects on psychological well-being, including poor academic achievement (despite normal intelligence, healthy family dynamics, and high socioeconomic status) and behavioral problems (eg, anxiety, attention-seeking actions, poor social skills). Morbidity related to the underlying cause of the growth failure may also be present.
Mortality rates in children with growth failure relate to the underlying cause of the growth failure. Mortality is not related to growth failure itself; rather, it is related only to the cause of the growth failure. “
Again, we at MAGIC ask, how important would this information be, if it were your child?
What to do if you suspect your child has a growth disorder?
Check with your child’s pediatrician. Review the growth rate (how much he/she is growing in a 12 month period). According to the Pediatric Endocrine Society, the minimum acceptable growth children should experience (after the age of 2 years) is 2 inches per year. However, if you review the most recent data from the CDC growth charts, the minimum acceptable growth children should experience per year to stay in their current healthy growth pattern is 2.5 inches per year. This is a significant difference when added up throughout their growing years. So please pay close attention to their growth each year!
Visit The MAGIC Foundation’s website for growth charts, general and specific growth disorders information and support.
Contact: Dianne Andrews, Executive Director,The MAGIC Foundation, (708) 383-0808
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Rooms Full of Extra Ordinary Little Kids
Children with rare medical disorders are traveling to
Chicago
For Immediate Release: 2007
Contact: The MAGIC Foundation Executive Director, Dianne Tamburrino at
708.383.0808
E-mail: dianne@magicfoundation.org
Many of these Kids:
- carry around g-tubes for feeding
- Use wheelchairs to "get around"
- Often speak with a high pitched voice
- Have visible physical challenges from multiple broken bones (hundreds)
- Yet, once a year, at Convention, no one picks on them
Parents come by bus, train, automobile and plane from all parts of the country and even other countries to attend The MAGIC Foundation’s Annual Educational Convention.
Here they spend hours learning the latest medical updates regarding their children’s medical condition. It is a program unequalled by any other in the world.
But the most amazing part of all of this is that these kids, who are often shy due to large and highly recognizable café-o-lait birthmarks spread across their bodies, or other visible physical challenges, are the “norm” for this brief moment in time. They do not hide from others. They do not hold their heads down, nor do parents feel any need to “explain”.
These disorders are listed as Rare Disorders in the medical literature. It is not often than these kids ever see another child like themselves, much less a room full! The Physician Specialists who volunteer their time to come speak to the families are always astounded at the room full of little kids. One physician stated, “No where else in the world would I ever see this. All these kids with these rare disorders in one place. It is simply incredible!”
Please feel free to join us or contact us to set up times and areas for family, physician or Foundation interviews. For photo's of past conventions, click here. The 2008 Convention will be held July 24-27th. Contactl us for additional details or program schedule.
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FOR IMMEDIATE RELEASE
December 19, 2007
The MAGIC Foundation Responds to Disclosure of Professional
Athletes’ Abuse of Growth Hormone
Non-Profit Speaks Out Against Growth Hormone Abuse
OAK PARK, IL—December 2007—The abuse of growth hormone by athletes and high profile celebrities has long-reaching consequences for children who need growth hormone therapy. An estimated 2 million children in this country are affected by short stature and many more have a problem that may radically affect the quality of their lives. For decades, families of children with a medical need for growth hormone therapy have faced discrimination from insurance companies and other parties regarding their child’s need for this vital hormone therapy. Today, children face challenges as a result of abuse by those who are seen as public role models for children.
When professional athletes abuse this hormone, it lends way for insurance companies to justify ways to deny growth hormone coverage to these needy children. Growth hormone is erroneously perceived as a drug used exclusively for physical gain. Yet, growth hormone deficient children truly need growth hormone to maintain a healthy heart, immune system, and much more other than physical growth.
The MAGIC Foundation, a national non-profit organization dedicated to serving families and individuals affected with growth disorders, intends to increase awareness of growth-related disorders and growth awareness programs that help numerous children with unidentified growth symptoms get early detection and correct diagnoses. If a child is not growing a minimum of 2 ½ inches each year, many things can cause the growth failure. Medical care can effectively treat underlying growth problems, but if treatment is delayed, it is harder for a child to catch up. Therefore, it’s crucial for children to easily receive therapy when needed.
- more -
“MAGIC’s motto is ‘Children have a short time to grow and a lifetime to live with those results,’” says Mary Andrews, CEO and Co-Founder of MAGIC. “People who abuse growth hormone are making it more difficult for parents to obtain the therapy needed to help their children grow.”
Parents of children in need of growth hormone are not only concerned about their child’s height when faced with the decision to utilize growth hormone therapy; they are also concerned about the non-physical factors that affect the long-term quality, possibly even the length of life that a child may have if they do not have the hormone.
A child’s height is nature’s way of communicating that something internal is wrong in a simple, visual way. If a child’s body visually communicated that they were developing a brain tumor by a lack of growth, that child would not be denied medicine needed to treat the tumor because it also fixed his lack of physical growth.
To the athletes and others who play roulette with their health, please remember: What you do has long-term consequences for which children are paying the price.
About The MAGIC Foundation
The MAGIC Foundation is a national nonprofit organization providing support services to the families of children afflicted with chronic and critical disorders, syndromes, and diseases that affect their growth. The MAGIC Foundation was founded by a small group of mothers with children who had growth disorders. It now has more than 17,000 members worldwide with divisions providing support for ten primary growth disorders, as well as networking for additional disorders. The MAGIC foundation is supported by membership fees, corporate sponsorship, private donations, and fundraising activities, and is committed to reducing the emotional and physical trauma caused by growth disorders so that healthier, happier children will grow up to become healthier, happier adults. For more information, contact 708-383-0808, or visit www.magicfoundation.org.
CONTACT: Marianne Wiedeman
The MAGIC Foundation
6645 W. North Ave
Oak Park, IL 60302
708-383-0808
marianne@magicfoundation.org
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Additional documentation on the Athletic Abuse Issue:
1. THE LEGAL ASPECTS OF STUDENT ATHLETES RECEIVING TREATMENT FOR GROWTH HORMONE DEFICIENCY
2. The MAGIC Foundation Policy
News links on this topic: http://www.oakparkjournal.com/2008/2008-human-growth-hormone-abuse-op-org-news-release-dec07.html
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