On the link below from MedicineNet.com you can read about Esophageal Manometry which is a method to determine how the muscle of the esophageal works.

This is one of the problems many scleroderma patients might get.

Esophageal Manometry (Esophageal Motility Study) Procedure Information by MedicineNet.com.

New York Times’ Health section recently covered this story about Raynaud’s Phenomenon – there is also good advice in the comments below the article.

New York Time’s sundhedssektion beskrev for nylig Raynaud’s Fænomen. Her er gode råd og også kommentarer, som svares af NYT’s lægeekspert.

Ask the Expert: Raynaud’s Phenomenon – Consults Blog – NYTimes.com.

- har fået vokseværk.

Jeg er meget stolt af at annoncere at Australien, USA og Canada er hoppet med på datoen, så nu hedder d. 29. juni VERDENS SKLERODERMI DAG ! Hmmm… eller måske det skal hedder International Sklerodermi Dag? Hvad synes du?

Jeg oplever lige nu revner i mine fingerspidser. Tænkte først at det er fordi jeg til daglig arbejder med bøger og rører ved en del papirer. Men denne i langemanden kom spontant – fik pludselig en stærk sviende smerte i fingeren og da jeg kiggede ned, så jeg dette syn. Og pegefingeren har jeg haft nogle dage… springer op gang på gang selvom jeg er meget påpasselig.

Sklerodermi relateret? Jeg har godt  nok frosset en del på det sidste og har også haft flere raynaud anfald med sorte fingre og har overvejet at øge dosis af ci-alis. (Skrives sådan for at holde spam væk )

Could this be a step on the road for a cure for scleroderma?

Study Reveals New Genetic Link To Scleroderma.

Spændende interview med skuespillerinden Regina Hall fra bl.a. Scary Movie. Hendes mor har sklerodermi.

Please read this wonderful interview with Regina Hall, known from the movies Scary Movie and the tv-serie Ally McBeal. Her mother is diagnosed with scleroderma and she works hard to spread awareness of this rare disease. Thank you, Regina!

Picture from http://blog.abilitymagazine.com

Regina Hall – Interview | ABILITY Magazine.

This is a videoclip from the first systemic sclerosis world congress.

It is my dear friend, Beata, from Hungary – a very warm and passionate young woman who is giving a speech about the topic “Living with scleroderma”. It is a bit similar with the speech I gave at the opening ceremony – thus this is a bit more in details.

Please go to the Fesca website to find other lectures from doctors given to patients. Note that the lectures are in details and they can be a bit scary for some. On the website you can also find other materials from the world congress – pictures, patient handouts, and so on.

Beata Garay-Toth – Living with Scleroderm
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