Johns Hopkins Medicine Experts Promote Awareness of Health Care Needs for Dwarfism Community

FOR IMMEDIATE RELEASE

October is full of awareness activities, but one area is less discussed and highlighted than others: dwarfism. People with dwarfism often face discrimination, and there is a shortage of health care professionals trained to help the dwarfism community with medical and living needs from newborn through adult stages of life. 

Johns Hopkins Medicine experts lead the longest-running clinic for people with dwarfism and other skeletal conditions. Started in the late 1950s, the clinic, now called the Kathryn and Alan C. Greenberg Center for Skeletal Dysplasia, provides medical care and resources. It also trains and educates health care professionals, and conducts research to improve the lives of people with dwarfism. 

Know the Facts

One of the most common forms of dwarfism is achondroplasia. People with this condition have shorter limbs and a larger head than people who are average size. Several research studies have found that achondroplasia occurs in about one in 20,000–30,000 births in the U.S. 

“People with dwarfism can do anything that people of average height can do,” says Colleen Gioffreda, a member of the dwarfism community and senior program administrator for the Greenberg Center at Johns Hopkins.

Resources and information on dwarfism are available from the Little People of America (LPA), an advocacy group that plans to hold its next national conference in July 2024 in Baltimore. Greenberg Center experts coordinate and manage an extensive clinic during the LPA annual meeting to provide guidance about routine care and to answer questions from meeting attendees. 

Know the Terms

There are many words and terms that are not respectful or acceptable when referring to members of the dwarfism community. Some people accept the term “little people,” and others prefer “people with dwarfism.”

“The best option, for many situations, is to call someone by their given name,” says Julie Elizabeth Hoover-Fong M.D., Ph. D., director of the Greenberg Center. 

Life Hacks and School Advocacy

For members of the dwarfism community, Greenberg Center experts provide advice about precautions and modifications to make daily living easier. These include the use of step stools, light switch extenders and closet modifications.

Learning about equipment for babies, such as appropriate highchairs, car seats and strollers, can be helpful for new parents.

Greenberg Center experts also help parents advocate for school accommodations and learning plans for their children with dwarfism, and often participate in advocacy for 504 and individualized education program (IEP) meetings.

Dwarfism Research The Greenberg Center at Johns Hopkins is the coordinating site for an ongoing, multi-institutional natural history study about achondroplasia. The collaborators have published eight manuscripts from this study about participants’ orthopedic issues, sleep apnea, hydrocephalus and other problems facing the community. Greenberg Center experts also train physicians, nurses and other allied health professionals across the country on care for people in the dwarfism community. 

Asante’s Story

You won’t meet too many people with the energy and enthusiasm that Asante has. His smile is infectious and, if you let him tell it, he will say “I’m just built different.” 

Donné knew her son Asante, who is a twin, was born different. Recognizing some key markers such as the trident fingers on his hand, Donné and her husband sought to get their son a diagnosis from the Greenberg Center for Skeletal Dysplasia and the results confirmed that Asante had dwarfism, along with cerebral palsy deriving from his premature birth. 

With the team at the Greenberg Center being such a resource for the Allens, Asante has been able to thrive in life and be an active participant in a yearly LPA summer camp where he can spend a week away from home and have fun with his friends. Recalling his experience at the camp, Asante said, “we have activities and game nights … at camp I get to be a morning person because I know I don’t have school on Monday.” 

Now 13 years old, Asante makes sure you know that despite the height difference, he is the older brother to his twin. “I’m 16 minutes older and every birthday, my brother has to blow his candles out after me,” Asante says.  

Although challenges arise and accommodations need to be made for Asante to reach his full potential, Donné does not place any limits on what Asante can become. 

“Whatever Asante can do, he will do,” she says. “I want him to be as self-sufficient as possible. My ultimate goal is for him to go to college, move out and reach his optimal potential.” 

The following Greenberg Center experts are available for interviews:

• Julie Elizabeth Hoover-Fong, M.D., Ph.D. – Director of the Greenberg Center for Skeletal Dysplasia
• Colleen Gioffreda, B.A. – Senior Program Administrator
• Amy Patterson, MS, CGC – Genetic Counselor
• Kira Lurman, R.N. – Clinical and Research Nurse