Beyond Achondroplasia

Growing together with Clara

March 25, 2015
by inesp.alves
1 Comment

One day of Lucas

Lucas is a 12 years old spanish boy who is crossing the lengthening process. This is a short film about one of his days. He is brave. He makes others feel braver… No need of translation.   Some words from … Continue reading

February 5, 2015
by inesp.alves
2 Comments

How can sleeping position influence obstructive sleep apnea

There are many positions a person can adopt to sleep. This article will make the approach to back and stomach sleep positions (supine and prone). “In 1992, the American Academy of Pediatrics released a statement recommending that all healthy infants be … Continue reading

January 11, 2015
by inesp.alves
0 comments

Clinical outcome of lower limb lengthening

This recent publication : “The etiology of short stature affects the clinical outcome of lower limb lengthening using external fixation“, by  S.Kim et al, Department of Orthopaedics, New Jersey Medical School, published in March 2014, the authors made a systematic review … Continue reading

October 17, 2014
by inesp.alves
2 Comments

Achondroplasia highlights

During three full days, the V International Congress around Achondroplasia and other Skeletal Dysplasia took place in the north of Spain, very well-organized by Alpe Foundation. Several world-renowned experts attended, giving one or more lectures, over 500 people registered, mainly parents … Continue reading

September 25, 2014
by inesp.alves
1 Comment

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

September 15, 2014
by inesp.alves
0 comments

Orphan Drugs Summit 2014 – Media partner

We are just two days of this great event and I’m honored to have been chosen to participate as a media partner. The Orphan Drugs Summit is the leading rare disease event in Northern Europe. A well-established platform where pharmaceutical companies … Continue reading

September 5, 2014
by inesp.alves
5 Comments

5th International Congress around achondroplasia and other skeletal dysplasias

Alpe Foundation, one of the most important spanish and european organisations for achondroplasia, is promoting  the 5th Congress, that will take place in north of Spain, Gijon, on the 11th, 12th and 13th October 2014. Their webpage is in spanish … Continue reading

August 17, 2014
by inesp.alves
1 Comment

Neurologic signs of cervico-medullary compression

Lately, I´ve knew about other children with Clara´s age and with achondroplasia that had to undergone emergency cervico-medullary decompression surgery. I know also that some parents observe strange signs in their children without recognizing them to be neurologic alterations. I … Continue reading

July 24, 2014
by inesp.alves
1 Comment

The long way up

Rarely I´ve mentioned here the hard and slow road of limb lenghtening. My first research on achondroplasia was at the day we received the genetic report confirming Clara had achondroplasia. Some moments get engraved in our memories in the hardest … Continue reading

July 17, 2014
by inesp.alves
5 Comments

Some moments of pure enchantment

 

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