Arkiv

Arkiv for kategorien ‘Scleroderma’

Managing Your Digical Ulcer

19 august, 2010 frk_bibo Ingen kommentarer
finger-ulcer

From www.sclero.org

Digital ulcers are bad and painfull in scleroderma. Around 40% of scleroderma patients get digital ulcers.

This article from Scleroderma Care Foundation gives you a few god advices to how to treat and manage digital ulcers.

Managing Your Digical Ulcer | Scleroderma Care Foundation.

Patient Voices: Scleroderma

29 juli, 2010 frk_bibo Ingen kommentarer

This is different stories from scleroderma patients – posted on the New York Times.

via Patient Voices: Scleroderma – Interactive Feature – NYTimes.com.

Categories: English, Scleroderma Tags:

Study suggests link between scleroderma, cancer in certain patients

10 juli, 2010 frk_bibo Ingen kommentarer

In this article is discussed wether there is a link between scleroderma and certain forms of cancer.

Many questions arise and the doctors are at the beginning at the research.

“Are particular antibodies in scleroderma associated with increased risk of cancer? Maybe we need to look,” she says. “And if you develop both at the same time, does treatment of one affect the outcome of the other?

“This research,” she says, “is really just the beginning.” [quote from the article]

Study suggests link between scleroderma, cancer in certain patients.

Categories: Scleroderma, Sklerodermi Tags: ,

Esophageal Manometry

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.

Regina Hall – Interview | ABILITY Magazine

27 april, 2010 frk_bibo Ingen kommentarer

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.

From the first systemic sclerosis world congress

12 april, 2010 frk_bibo Ingen kommentarer

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
Uploaded by antalcs. – Discover more science and tech videos.

Managing Chronic Pain | Lær at leve med kroniske smerter

3 april, 2010 frk_bibo Ingen kommentarer

To be a scleroderma patient sometimes means pain, and for many even chronic pain – especially if your scleroderma is in an active fase. Mine is quite active at the moment (with joint pains all over) and the pain drains you for the energy that you didn’t have to begin with.

I just stumpled over this article with a few tips on how to manage chronic pain.

Managing Chronic Pain: 11 Coping Tips.

Dansk: At have sklerodermi kan nogle gange betyde at din krop smerter til trods for at den nærmest pumpes med smertestillende. Det er især når sklerodermien er aktiv. Min sklerodermi er i sin aktive fase lige nu, og det er især mine led der ikke er samarbejdsvillige. Smerterne dræner én for den energi man ikke har i forvejen.

Jeg faldt just over denne engelske artikel, som giver et par tips til hvordan man kan håndtere sine kroniske smerter. Vist noget jeg skal studere lidt nærmere.

Managing Chronic Pain: 11 Coping Tips.

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