Beyond Achondroplasia

Growing together with Clara

November 1, 2014
by inesp.alves
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Statins for achondroplasia update

I contacted Professor Noriyuki Tsumaki, the head researcher for the study of the use of statins in achondroplasia, also mentioned in a post here. I kindly got  the following asnwers: “Statins should not be used in children because statins decrease cholesterol, … 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

October 17, 2014
by inesp.alves
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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

October 10, 2014
by inesp.alves
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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

October 3, 2014
by inesp.alves
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Chronic subdural hematoma

Two days ago, Clara had 3 routine appointments scheduled with her orthopedist, ENT and neurosurgery assistant doctors. She had a MRI done on September 10th and all seemed to be just fine. But it wasn´t. Clara´s MRI showed a very clear … 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 18, 2014
by inesp.alves
5 Comments

Statins for achondroplasia?

Nature journal published yesterday an article connecting statins to achondroplasia treatment. You can read the abstract of the article “Statin treatment rescues FGFR3 skeletal dysplasia phenotypes“.A. Yamashita et al. Nature,doi:10.1038/nature13775, 2014 Statins or HMG-CoA reductase inhibitors are a class of drugs used … Continue reading

September 15, 2014
by inesp.alves
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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 29, 2014
by inesp.alves
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What can 3D bioprinting do for achondroplasia?

The last days, I have been doing some research about 3d bioprinting and I´m completely amazed by all that I found. This impressive technic is a huge evolution in medicine and it shows obvious signs that it will, in a … Continue reading

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