Post Archives

Visitor Survey

Visitor Survey

rare disease

Link: Accused of Being a Hypochondriac, Lisa is Finally Diagnosed with Acute Intermittent Porphyria

A swollen stomach made her look pregnant, but the pain — “burning,” “shocking,” “horrible,” “out-of-this world,” as she describes it — was worse than childbirth, leaving her doubled over and gasping for breath. Symptoms came and went, seemingly at random. Vomiting. Constipation. High blood pressure. A racing pulse. Numbness in her hands. Paralysis in her right foot.

The full article can be found at GlobalGenes.com.

Copyright © Author Michael Overall

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

Link: Woman misdiagnosed with cerebral palsy gets cure after 33 years

Jean Sharon Abbott spent nearly all of her life believing she had an incurable condition that left her feeling “trapped” in her own body — unaware that many of her symptoms could be easily treated with a pill.

The 38-year-old Minnesota mother of three was diagnosed as a child with spastic diplegia, a form of cerebral palsy, a neurological disorder that appears early in life and permanently disrupts the brain’s ability to control movement and balance.

Posted on 23rd April, 2015 by G.D. Read the full story and watch the news video at http://www.cbsnews.com/news/woman-misdiagnosed-with-cerebral-palsy-gets-cure-after-33-years/.

 

By PAULA COHEN | CBS NEWS April 22, 2015, 2:39 PM

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

Link: How the rare disease community can help Mark2Cure help rare disease research

Now, imagine if patients could even more1 to advance research on their own disease? Would being able to say, “I helped discover that” be empowering? There are some examples of when patients or parents of patients became research experts and pioneered new discoveries about a disease, but that is not the norm.

Read more about Mark2Cure by visiting this post by “ginger” at http://sulab.org/2015/01/how-the-rare-disease-community-can-help-mark2cure-help-rare-disease-research/.

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

Link: Norwich man reveals his ‘horrendous’ battle with rare autoimmune disease

A Norwich man today told how he ended up in a mental health unit and attempted suicide because of a disease so rare it took months for doctors to diagnose.

The full article can be found at http://www.edp24.co.uk/.

 

Copyright © EDP24 January 2015 | by Tom Bristow

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

Video: Rare Disease Day (Official Video)

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.