This article originally appeared in Star Chronicle, a newsletter
published for the Children's Medical Center.
When their son, Jonathon, nine, was diagnosed with the rare skin disorder
epidermolysis bullosa (EB) at five months old, Whitney Connolly and Jonathon
Rose soon discovered the challenges before them. First was finding a
dermatologist familiar with treating the disease. After several years of
searching, Jonathon's parents found the right fit at UMass Memorial Children's
"EB is a group of inherited disorders characterized by extremely fragile skin
where blisters develop in response to minor friction or trauma," explained Karen
Wiss, MD, chief of pediatric dermatology.
Under the care of Dr.Wiss, Jonathon is now scheduled for visits every three
months, a significant gain compared to his younger years when he had
appointments at the UMass Memorial EB Clinic twice a month. Jonathon, who has
moderate EB, is prone to daily outbreaks on his hands and anywhere there is
contact to his skin.
The UMass Memorial Division of Pediatric Dermatology is a designated EB
referral site serving New England. UMass Memorial is currently treating about 35
pediatric patients with the rare disease, which affects only 12,000 Americans.
The division's two physicians - Dr.Wiss and Leah Belazarian, MD - along with
other UMass Memorial dermatologists - see about 6,500 pediatric dermatology
patients each year.
As an EB patient benefiting from care at UMass Memorial, Jonathon's young
life has been plagued by setbacks caused by slips and falls, starting as an
infant when he tumbled out of his car seat. At age five, a deep cut to his right
middle finger almost ended in amputation.
Today, his treatment plan is less structured. His daily routine still
requires wrapping his knees, feet and sometimes his elbows and wrists with
bandages, but every-other-day bleach baths for fighting infection are now needed
less than once a month. "As he gets older, he knows his boundaries and thinks of
the consequences," said Ms. Connolly. "He is well educated about EB and how to
Despite his disease, Jonathon is very much a typical nine-year-old boy. An
avid hockey fan, he enjoys watching "Cops" and visits to Chuck E. Cheese's.
For more information, call 508-334-5979.