Beyond Achondroplasia

Growing together with Clara

July 10, 2016
by inesp.alves
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Basic indications to handle a baby/young child with achondroplasia

1. Avoid devices that bend the back: soft infant carriers, infant swings, umbrella strollers and other soft devices; 2. Use hard backed carriages, strollers and supportive devices; 3. Support the baby’s head and back of the neck at all times; … Continue reading

November 24, 2015
by inesp.alves
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EUPATI patient expert course

EUPATI is a pan-European Innovative Medicines Initiative (IMI) project of 33 organizations, led by the European Patients’ Forum, with partners from patient organizations, universities and not-for-profit organisations, along with a number of European pharmaceutical companies. The goal is to help patients be more … Continue reading

May 8, 2015
by inesp.alves
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Like a Phoenix – living the diagnostic

This was writing a long time ago. This is a short story of the day we, parents, received Clara´s achondroplasia diagnostic. A month after Clara was born, we received an email from her geneticist to schedule an appointment. During 25 days … Continue reading

March 1, 2015
by inesp.alves
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Surgical treatment for cervicomedullary compression among infants with achondroplasia

Dr. Shimony’s team published on the 17th of February 2015 in the Childs Nerv. Syst. journal, an article about respiratory failure being responsible for most deaths among children with achondroplasia and that it is often related to cervicomedullary compression (CMC). … Continue reading

January 12, 2015
by inesp.alves
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Active play

Pushing a doll stroller its one of the latest physical therapy exercises Clara does with her therapist and she really enjoy it. Now she has her own doll stroller and she plays with it a lot. “Pushing toys provide a … Continue reading

January 3, 2015
by inesp.alves
5 Comments

2015

The first day of 2015 is for nature, just another day for the earth cycle. But for the human civilization, this is a time for decisions, motivations, thoughts and determinations. This year is very promising! But for sure, we have to … Continue reading

November 25, 2014
by inesp.alves
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Day dreaming by Joan Pahisa

Joan is an amazing young man. He has a great smile, always inspiring others, very well-educated and with a genial energy for sports. He is totally engaging. I meet him last October during the International Congress around achondroplasia and other skeletal … Continue reading

October 22, 2014
by inesp.alves
2 Comments

Subdural hematoma update

Medicine is the science of the diagnosis, treatment, and prevention of diseases. But is not mathematics. Besides knowledge and experience, medical doctors need to have sensibility for the problem and inspiration. Clara’s MRI with the subdural hematoma has been evaluated by … Continue reading

September 25, 2014
by inesp.alves
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Anual MRI

Since the surprise from the results of the first MRI, when Clara was 9 months old, that anxiety was always there on the other two times Clara was submitted to this exam. The sedation procedure with inhalatory anesthetic is smooth and painless … Continue reading

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