From the Information Center
Health Alert –
Dangerous Respiratory Virus
The national news media is
reporting that a serious respiratory illness in a very short time sent more
than a thousand children to the hospital in Missouri, Kansas, Illinois,
Kentucky, Iowa, Colorado, Ohio, Oklahoma, North Carolina, and Georgia. This
illness is caused by a particularly aggressive respiratory virus that health
officials fear will spread rapidly. The virus, called an enterovirus, is
related to the virus which causes the common cold. Symptoms start out like a
cold – runny nose, sneezing, and coughing. But wheezing and other signs of
shortness of breath come on quickly. This virus can be particularly dangerous
for children who have asthma or other respiratory problems.
The OI Foundation asked its
medical advisors what this means for people who have OI. Dr. Hollis Chaney,
pediatric pulmonologist at Children’s National Medical Center in Washington, DC
advises everyone who has asthma or recurrent bronchitis or who is prone to
pneumonia to be on the alert. If a child develops cold symptoms, parents should
start their “sick plan” right away, and if symptoms get worse, see a doctor
Dr. Robert Sandhaus, a
pulmonologist in Denver, CO, site of one of the major outbreaks, adds that
children, teens and adults should be sure to take their asthma medications
regularly and to contact their doctor at the first sign that medications are
losing their effectiveness.
Both doctors stress that the
first line of defense is to avoid people who are ill and to wash hands
frequently and thoroughly.
This is extremely important
to the OI community because of the variety of breathing (pulmonary) problems
they experience. OI affects not only bones but also alters the structure of
lung tissue and increases the potential for a serious breathing problem. Rib
fractures, chest wall size and shape, kyphoscoliosis and short stature can make
a breathing problem worse. Understanding that the lungs themselves are affected
by OI means that respiratory health is important for everyone who has OI.
The OI Foundation would like
to bring a study to your attention. Adrienne Baez, a Master’s Degree student
who has OI herself, is doing a survey about how people who have an obvious
physical difference cope. It is titled “Body Image as a Moderator of Disability
and Resilience.” This online survey is estimated to take 30 minutes. You
are eligible to take this survey if you meet the following criteria:
1. You have a diagnosis
of osteogenesis imperfecta (OI).
2. You are age 18 or
3. Your first language is
For more information and to
read the official announcement, go to the OIF website and click the Research
Tab. If you would like to participate in this study go to http://tinyurl.com/OIdisabilitysurvey.
Resource Reminder- Check
out the Abilities Expo near you!
The Abilities Expo is a
commercial enterprise that hosts informative workshops and exhibit halls for
the community of people with disabilities, their families, caregivers, seniors,
and healthcare professionals. The exhibit halls are FREE to attend and
have a wide range of products and services- from personal care items to
accessible vehicles, and major home renovations. The Expo travels to
several cities throughout the year- New York, Chicago, Houston, Boston, Los
Angeles, and the San Francisco Bay Area. Visit their website (www.abilitiesexpo.com) to see if an Abilities Expo is
coming soon near you!
This year, many of the
conference speakers provided handouts, or wrote short summaries or “Take Home
Messages” for their sessions. These have been posted on the OIF website. To
view them, go to www.oif.org,
and click on the Events Tab. The summaries are listed on the bottom of the
national conference page. Items continue to be added as they become available.