Dwarfism FAQ (part 2 of 2)
Dan Kennedy
Q: We've heard that very young achondroplastic children can run into a
variety of complications. What should we be looking for?
A: Essentially there are three complications that are sometimes found in
achondroplastic infants and toddlers. In all likelihood your child will not
run into any of these problems, but she or he should be evaluated for them
nevertheless.
1. Compression of the brain stem resulting from the top of the spinal
column, known as the foramen magnum, being too small to accommodate the
spinal cord. Symptoms include central apnea (a condition that causes a
person to stop breathing frequently while sleeping) and a general failure to
thrive. This condition is treated through surgery, and children who have
undergone this operation tend to do very well.
2. Hydrocephalus, the technical term for excess fluid on the brain,
resulting from the drainage openings in the skull being of insufficient
size. All people with achondroplasia have some hydrocephalus, and no harm
generally results. In addition, all people with achondroplasia have slightly
enlarged heads, which can sometimes create the appearance of a problem where
there is none. Nevertheless, occasionally hydrocephalus can present a
problem, in which case a shunt may be surgically implanted to drain excess
fluid.
3. Obstructive apnea resulting from an infant's or very young child's
airways being too small or improperly shaped. The child stops breathing and
wakes up frequently during the night (unfortunately, as is generally the
case with apnea, these moments of wakefulness are fleeting and often go
undetected by parents), sweats, snores, and fails to thrive. Depending on
the severity, a physician may recommend waiting until the child outgrows the
problem; monitoring the child's oxygen levels and trying treatments such as
supplemental oxygen and/or CPAP, a treatment device that provides pressure
to the lungs; or, in rare instances, performing a tracheostomy to circumvent
the tiny upper airways until those airways have a chance to grow.
All of these problems, as well as others, are discussed in more detail in
"Health Supervision for Children with Achondroplasia."
Q: Can you recommend any books?
A: Yes. Two excellent books by medical anthropologist Joan Ablon, Little
People in America and Living with Difference, discuss the social dimensions
of dwarfism, both on LPs and their families. Dwarfism: The Family &
Professional Guide, by the Short Stature Foundation & Information Center, is
a good introductory resource, and it's currently being reworked. Thinking
Big, by Susan Kuklin, is a portrait/photo essay of an eight-year-old girl
with achondroplasia that is an outstanding introduction for a young child
with achondroplasia. There are a number of other books that are also
helpful. Most of these are listed in LPA's newsletter, LPA Today, which
members receive as part of their dues.
Q: The children at my child's school don't understand dwarfism, and they
taunt and tease her. What should I do?
A: Opinions vary, and there is probably not any one-answer-fits-all
solution. For some answers, you might want to buy a slide show that's been
transferred to videotape called What Children Want To Know About Little
People. For information on how to order this $20 tape, contact Lenette
Sawisch at 3725 West Holmes Road, Lansing, MI 48911-2106, telephone (517)
393-3116; or send e-mail to saw...@voyager.net.
Q: Is it possible to adopt children with dwarfism?
A: Yes. Children are available both in the United States and abroad. There
are no shortcuts, however. Adopting a dwarf child is every bit as
challenging and arduous a process as adopting an average-stature child. For
more information, please contact Nancy Rockwood, who runs LPA's adoption
program, at 1210 Woodland Park Drive, Hurst, TX 76053, telephone (800)
LPA-ADOPT. She can be reached by e-mail at lpaa...@aol.com.
Q: Is it safe for a person affected with dwarfism to exercise?
A: Although exercise must be taken on a case-by-case basis, bearing in mind
the type of dwarfism and how severely the person is affected, in general
exercise is highly recommended. For a healthy person with achondroplasia, as
well as some other types of dwarfism, swimming and bicycling can be
recommended without hesitation. A doctor's advice should be sought out in
the case of other physical activities.
There's even an exercise video for people with dwarfism: The Perfect Little
Body Workout, a 35-minute tape that emphasizes low-impact aerobics, starring
Pam Prentice, who's an achondroplastic dwarf. The video is popular with all
ages, among both men and women. It focuses on exercises to prevent back pain
and to increase mobility, and has been approved by members of the LPA
Medical Advisory Board. It costs $29.95 plus $3.50 postage and handling, and
is available in VHS and PAL. To order, send a check to: Pam Prentice; 538
Ironwood Terrace #6; Sunnyvale, CA 94086.
Q: I'm a short-statured adult who has a difficult time finding clothes.
Where can I shop for small-size clothes that are appropriate for an adult?
A: Two mail-order businesses are recommended: Morningstar Apparel Company,
of Chattanooga, Tennessee, (615) 855-1172; and Short Sizes Inc., 5385
Warrensville Center Blvd., Cleveland, OH 44137, telephone (216) 475-2515,
fax (216) 475-7440.
Also, some short-statured people have good luck at Gap Kids and the Limited
Too, which sell some children's clothes that are identical or nearly
identical to their adult clothes.
Q: I have a hard time sitting in standard-size chairs, especially when I'm
trying to work at a desk. What can I do?
A: You can buy an ErgoChair for Little People, from Adaptive Living, which
comes highly recommended by a number of dwarfs who've tried it. The
ErgoChair is an excellent choice for anyone who wants to be able to sit at a
desk without back or leg pain. The height, the depth of the seat, the
backrest, and the T-bar footrest are all adjustable, which makes it easily
adaptable to standard-issue desks. The ErgoChair for Little People comes in
a variety of colors and with several different options.
For more information, write to Adaptive Living, Box 60857, Rochester, NY
14606; call (716) 235-7270; fax (716) 235-0922; or e-mail at
rvan...@aol.com.
Q: What about other adaptive equipment, such as light-switch extenders?
A: We've heard good things about a mail-order company called Enrichments.
For a catalogue, call (800) 323-5547.
Q: Either I or a member of my family needs specialized medical care. Can you
recommend a doctor?
A: The Little People of America's Medical Advisory Board is made up of
outstanding medical professionals who specialize in dwarfism. They have all
given unselfishly of their time and expertise in order to serve on this
board. You or your physician may wish to contact them for specialized
information. The members of the board are:
Delaware: Charles I. Scott Jr., MD (chairperson); Director, Division of
Genetics; Alfred I duPont Institute; P.O. Box 269; Wilmington, DE 19899;
telephone (302) 651-5916; fax (302) 651-5948.
Los Angeles: George S. Bassett, MD; Department of Orthopedic Surgery;
Children's Hospital of Los Angeles; 1300 North Vermont, Suite 600; Los
Angeles, CA 90027; telephone (213) 669-4658; fax (213) 666-4409.
Maryland: Betty R. Elder, MS; 5007 Sweet Air Road; Baldwin, MD 21013;
telephone (410) 592-6759 (home); (410) 825-1841 (work).
Baltimore: Clair A. Francomano, MD; Johns Hopkins Hospital; Blalock 1012;
600 North Wolfe Street; Baltimore, MD 21287-4922; telephone (410) 955-1408;
fax (410) 614-2522.
Vancouver: Judith G. Hall, MD; Department of Pediatrics, UBC; BC Children's
Hospital; Oak Street #710; Vancouver, BC V6H 3V4; Canada; telephone (604)
875-2315; fax (604) 875-2890.
Oregon: William A. Horton, MD; Shriners Hospital; 2101 SW Sam Jackson Park
Road; Portland, OR 97201; telephone (503) 221-3467; fax (503) 221-3451.
Baltimore: Orest Hurko, MD; Department of Neurology -- Meyer 6-119; Johns
Hopkins Hospital; 600 North Wolfe Street; Baltimore, MD 21287-7619;
telephone (410) 955-3950; fax (410) 955-0672.
Maryland: Steven E. Kopits, MD; International Center for Skeletal Dysplasia;
St. Joseph Hospital; 7620 York Road; Towson, MD 21204; telephone (410)
337-1250; fax (410) 337-1042.
Minneapolis: Leonard O. Langer, MD; 1235 Yale Place, #710; Minneapolis, MN
55403; telephone (612) 338-6850.
Baltimore: Victor A. McKusick, MD; Johns Hopkins Hospital; Blalock 1007; 600
North Wolfe Street; Baltimore, MD 21287-4922; telephone (410) 955-6641; fax
(410) 955-4999.
Baltimore: Kathleen "Dee" Miller; Greenberg Center for Skeletal Dysplasias;
Johns Hopkins Hospital; 600 North Wolfe Street; Blalock 1012; Baltimore, MD
21287-4922; telephone (410) 614-0977; fax (410) 614-2522.
Wisconsin: Richard M. Pauli, MD, PhD; Clinical Genetics Center -- Room 353;
University of Wisconsin; 1500 Highland Avenue; Madison, WI 53706-2280;
telephone (608) 263-6874; fax (608) 263-3496.
New Jersey: Cheryl S. Reid, MD; Department of Pediatrics; Cooper Hospital
University Medical Center; E & R Building -- 410 Haddon Avenue; Camden, NJ
08103; telephone (609) 757-9797; fax (609) 757-9647.
Los Angeles: David L. Rimoin, MD, PhD; Director of Pediatrics; Cedar-Sinai
Medical Center; 8700 Beverly Boulevard; Box 48750; Los Angeles, CA
90048-0750; telephone (310) 855-4461; fax (310) 967-0145.
Baltimore: Kathryn K. Smith; Johns Hopkins Hospital; Blalock 1007; 600 North
Wolfe Street; Baltimore, MD 21287-4922; telephone (410) 955-6641; fax (410)
955-4999.
Maryland: Joan O. Weiss, MSW; Alliance of Genetic Support Groups; 35
Wisconsin Circle, Suite 440; Chevy Chase, MD 20815-7015; telephone (800)
336-GENE or (301) 652-5553; fax (301) 654-0171.
Q: What is the background of the Little People of America?
A: LPA was founded in 1957 by the actor Billy Barty. There are about 5,000
members, half of whom are average-size family members. It's been estimated
that LPA reaches about 10 percent of the dwarf community.
Q: Who is the president of LPA?
A: The current president is Leroy Bankowski, a former director of District
11 and assistant director of District 12, who was elected at LPA's annual
convention in August 1996. He can be reached by e-mail at lpa...@aol.com.
Q: How do I join LPA?
A: Send a check for $25 made out to Little People of America, with your
name, address, phone number, age, and type of short stature, to: Lee
Kitchens, Database Coordinator, 27 Sunrise Lane, Ransom Canyon, TX 79366.
Q: Does LPA hold an annual convention?
A: Yes. The 1997 convention will be held from July 7 through 11 in Atlanta.
Q: How do I find a specialist who understands my type of short stature in my
part of the country?
A: Call (800) 24 DWARF. We are working to update listings. If you have had
particularly good experiences with a specialist, send an e-mail to LPA
president Leroy Bankowski, and LPA will look at adding that specialist.
Q: How do I find out about a chapter in my area?
A: You'll find information about local chapters on the Dwarfism Home Page.
If you can't find what you're looking for, or if you don't have access to
the World-Wide Web, send a message to LPA president Leroy Bankowski for more
information.
Q: There's a topic that I think the FAQ should address that I don't see in
here. What should I do?
A: The FAQ is a compilation of accepted wisdom about dwarfism to which a
number of people have contributed. If there's a topic you'd like to see
addressed in the FAQ, or if you have a suggested addition, please e-mail it
to Dan Kennedy.