Improving the quality of life for people diagnosed with OI

Update on Coronavirus ”Covid19”

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Living with OI? Concerned with the coronavirus ”covid19” Pandemic? 

OI does not affect the immune system as such! However, lung connective tissue is altered in all types of OI. The severity of symptoms and the risk for pulmonary problems is increased in people with short stature, abnormal chest shape, kyphoscoliosis, and vertebral or rib fractures.

In some countries they have specifically put osteogenesis imperfecta on the official list of “at-risk patients”. See the “Clinical guide for the management of rheumatology patients during the coronavirus pandemic” as an example from the UK.

See also “A message from the OI Foundation about Coronavirus” 

Resources on pulmonary issues & OI 

Fact sheets from the OI Foundation about:
– Respiratory issues:
– Adults with OI & breathing issues:
– Pneumonia vaccine for people with OI:

Pneumonia Vaccine Update
Information for Children and Adults who have OI
The Centers for Disease Control (CDC) recently updated recommendations regarding the pneumonia vaccine.

The addition of a second vaccine, that covers additional strains of pneumonia, led to the change. Both vaccines — PCV13 and PPSV23 are recommended to be fully protected. There are separate recommendations for infants/young children, adults and adults age 65 and older.

Most people who have OI – children and adults—are considered to be “at risk” of pneumococcal infection.
People who are “at risk” are advised to get the annual flu vaccine and to get the pneumonia vaccine on the schedule that corresponds to their age and vaccine history.
Pneumonia Vaccine Recommendations for People at Risk of Pneumococcal Infection
(Based on CDC vaccine recommendations)
 Infants and young children should initially receive Pneumococcal Conjugate Vaccine (PCV13) as a onetime immunization, followed at least one year later by PPSV23 immunization.
o Each is administered as a single injection.
o A booster of the PPSV23 is recommended five years after the first PPSV23 immunization.
 Children and adults who have never received a pneumococcal immunization should receive a single dose of PPCV13 followed by a dose of PPSV23 at least 1 year later.
o If the person already received the PPSV23, then a single dose of PCV13 is given at least 1 year
o If the person already received the PCV13, then a single dose of PCV23 is given at least 1 year
o A booster of the PPSV23 is recommended five years after the first PPSV23 immunization
 Adults who received their first dose of PPSV23 at age 65 or older do not need the booster.
1. Baby born with OI felt to be ‘at risk’ for pneumococcal infection:
a. PCV13 shot in first year of life; PPSV23 at age 2; PPSV23 booster at age 7.
b. Done (until new recommendations are made).
2. Child with OI age 13 who never received pneumococcal immunization:
a. PCV13 shot now; PPSV23 at age 14; PPSV23 booster 5 years later. Done.
3. Adult who received PPSV23 10 years ago:
a. PCV13 now; PPSV23 one year later. Done
4. Adult over 65 with OI who never received pneumococcal vaccine:
a. PCV13 now; PPSV23 one year later.
b. Done (no booster of PPSV23 for those whose first dose occurs at age 65 or older)

General emergency information for people with OI 

Official sources of information about COVID-19

With the fast-evolving situation surrounding COVID-19 in Nigeria, Europe and across the world, members of the rare disease community may be concerned about their health. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities/ ministries.

Webinar on COVID-19 & OI on YouTube

Did you miss the great Q&A webinar with Dr. Robert Sandhaus (pulmonologist) and Dr. Francis Glorieux about COVID-19 and OI? If you were not able to attend the call, please watch the recording here:

If you are in doubt with what you should do in the current situation – please contact the health care providers in your country!