Beyond Achondroplasia

Growing together with Clara

March 10, 2015
by inesp.alves
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Elbow deformities in achondroplasia

Clara has a reduced elbow extension and I started doing research about the elbow´s anatomy in achondroplasia and if there could be any physiotherapy approach to improve the elbow extension. Until the moment, I haven´t found any. I found this guideline: Achondroplasia (0 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 10, 2014
by inesp.alves
2 Comments

Prevention of intracranial hematomas

A child with achondroplasia has, among other body characteristics, a large and heavy head and disproportional short extremities (arms and legs), increasing the difficulty to control gait. For that, the probability of hitting the head harder while walking, playing or just … Continue reading

January 8, 2014
by inesp.alves
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Creating art!

“A little chicken in a picnic with her ​​chicks”- acrylic on canvas, by Afonso and Clara (2014) “Instead of seeing cartoons, let´s paint” – I said! Afonso loved the idea and he had right away a theme and title (that … Continue reading

June 26, 2013
by inesp.alves
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The first day after

And one day went through! Since thursday, I stayed with Clara at the hospital during all day and night. But last night (the first after surgeries) and tonight, my husband wanted to stay with Clara at the ICU (Intensive care … Continue reading

June 2, 2013
by inesp.alves
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Countryside children´s day

Yesterday, the 1st June, it was children´s day celebration. At least in Portugal! Without material gifts, we celebrated the day together, doing several things with Clara and her brother and they could experience new sensations. First, Clara went to her … Continue reading

May 4, 2013
by inesp.alves
2 Comments

The chosen ones

I´m not a religious person. I´ve no faith in any religion. But I have faith in what we can achieve with our capacities, determination and will. A friend sent me this story a couple of months ago, but now I … Continue reading

May 2, 2013
by inesp.alves
1 Comment

Discussing choices – Discussão de escolhas

Yesterday, a debate was started in Facebook achondroplasia group. It was about the hypothesis of treating achondroplasia with a new potential therapy using a new compound (BMN-111), similar to a natural one, that exists in condrocites. http://clinicaltrials.gov/show/NCT01603095 Doing a flashback in … Continue reading

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