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Living with a Rare Disease: stories from patients and familieslink :
Living with a Rare Disease: stories from patients and families
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Living with a Rare Disease: stories from patients and families
Living with a Rare Disease: stories from patients and families
The Voice of Rare Disease
Patients in Europe
Living with a Rare Disease
Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families. Here is a collection of stories and videos from people who have generously shared their experiences of living with a rare disease. Would you like to share you own experience?
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Search the below living with a rare disease stories that are listed A – Z according to disease name.
Marco, 40 years old, is the first member of his family to be affected by achondroplasia, a bone growth disorder affecting 1 in every 15 000 births.
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Simon Laxon was, unusually, diagnosed with Alkaptonuria (AKU) when he was six weeks old.
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Claude knew that he had a health problem - he would sometimes have blood in his urine - but had somehow learned to deal with it.
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Jane Villemoes tells us about daily life, the joys, the battles won and those lost while bringing up Cecilie, her 12 year old daughter diagnosed with Angelman syndrome.
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Daniel Sanchez de Vega was diagnosed with Aniridia when he was one week old. His mother Rosa being affected too, the diagnosis was reached early.
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My name is Timo. In 2012, I was diagnosed with a rare disease called aortic dissection (AD) type A.
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Cindy from the US tells us her story of living with Behçet's disease, a chronic condition resulting from disturbances in the body’s immune system. Connect with others living with Behçet's disease in the...
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Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems.
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Acting at European level to gather families, networks, provide mutual support and stimulate research.
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Liliana and MP were born 27 years apart. Their stories show us the progress and development achieved in nearly 30 years.
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Misko lives with Duchenne Muscular Dystrophy (DMD). His parents have created an eponymous foundation to offer helpful guidance to all parents of children with DMD
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Björn Håkansson was born in Sweden, in 1960, with dysmelia, a malformation in which he has underdeveloped arms with 3 fingers on each hand.
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Florence Simonis summarises accurately, if a bit sadly, the life of a rare disease patient.
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My name is Daniela Chiriac. I am 34 years old, and a member of a family of three, including my mother and my elder sister. All of us are suffering from progressive muscular dystrophy. I was diagnosed with Facioscapulohumeral muscular dystrophy in 2010, after a bad episode at work.
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Familial cold autoinflammatory syndrome type 2 (FCAS2) is a rare inflammatory disease characterised by recurrent episodes of rash, joint and muscle pain, fever and chills, swelling of the extremities and conjunctivitis, all as a result of exposure to cold. This...
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Manuel was only 4 years old when he was diagnosed with Fibrodysplasia Ossificans Progressiva, an extremely rare genetic condition that affects 1 in 2 million people.
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Paul and brothers Sebastien and Antoine have Fragile-X syndrome. Two mothers share their experience.
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Friedreich's Ataxia is a genetic and progressive disorder of the central nervous system where the general symptoms are clumsiness, difficulties with balance...
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With the aid of University of Ghent Professor Rudy Van Coster, we have produced a flyer to help parents and clinicians identify GAN.
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Hyper positive, a fighter, very active: three aspects of Fide in her own words.
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In sickness and in health, two husbands become heroes.
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'My wife and I knew that my father-in-law suffered from ichthyosis, but we didn't associate it with a genetic condition,' says Flavio Minelli, member of the Board of Eurordis.
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'When I was pregnant with Victoria, I was quite confident that things would go as smoothly as for my first child"
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The challenges of a dramatically under-diagnosed rare disease
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Luigi Ferraro, was the happiest man in the world: his wife Daniela was about to give birth to their second child. Then, without warning, their whole world fell apart. Only five hours after Daniela gave birth, she started having headaches and went into a coma.
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Véronique Vrinds was not just taller than her friends at school; she was also a bit more awkward and much more prone to sprains.
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Liesbeth Laan, a school nurse based in The Hague, Netherlands, had a smooth pregnancy and delivered Joas at home in July 2006.
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Tristan and Lily were second-prize winners in the 2013 EURORDIS Photo Contest
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Ritje’s husband JiePie passed away from the rare disease multiple system atrophy (MSA) in 2009. Here she tells their story. It took six years to get a correct diagnosis. Six years to be heard, to find a...
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Linda R. tells us about her daughter’s life with Narcolepsy, a rare disorder that causes excessive sleepiness and cataplexy
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At the age of ten, Dietmar was causing himself so many injuries by falling down that we asked the doctor for a brain scan.
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It was Alberto Vargas' birthday when he got conclusive news that his youngest daughter, Valeria, had Niemann-Pick disease. Middle daughter Fernanda had already died of the incurable degenerative disorder.
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A child may be affected by Noonan syndrome in various ways: unusual facial characteristics, short stature, heart defects
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My first daughter Marilena (from Maria Eleni) was born prematurely (32 weeks of pregnancy) due to oligohydramnios, a few weeks before the Olympic Games were held in Athens in 2004. She had very bad respiratory issues to begin with. She was diagnosed with Okamoto syndrome when she was 2 years old.
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Osteogenesis imperfecta (OI) is a group of rare genetic disorders that mainly affect the bones.
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Wesleyon Zollicoffer was born a fighter. At the age of eight doctors discovered that he had inherited the genetic disease Peutz-Jeghers syndrome (PJS) from his mother.
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This pretty young woman has PKU, an inborn error of protein metabolism that results from an impaired ability to metabolise the essential amino acid phenylalanine.
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My name is Pia. My husband John and I have a rare and unique daughter, Olivia, who is 15 years old.
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“At the specialised centre, they told me that without treatment, I had 2 years to live and with a treatment, it was still a very poor prognosis,”
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Instead of focusing on the negative aspects of their daughters’ Rett Syndrome, two women draw strength from the positive.
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'My husband and I had never heard of Sanfilippo syndrome before the doctors told us in July 2005 that our dear and beautiful Ornella was suffering from the disease.'
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Philippa has superior semicircular canal dehiscence syndrome (SCDS), a rare balance disorder
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During the autumn of 1997, aged 24, my fingers became very stiff and swollen with shiny tight skin
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Jenny Hippocrate’s son, Taylor, has sickle cell disease. Together they are working to make life better for everyone with this condition.
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Yuliya, a five year old gorgeous blue-eyed girl, had a normal childhood until her first birthday.
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In 1983 Liz Blows was diagnosed with diabetes. She adjusted to a regime of dietary control and regular injections and got on with her life.
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Philippe Grammont, founder and Vice-President of the French Association for Strümpell-Lorrain tells his story
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Marianna Lambrou stepped up to the podium at the European Conference on Rare Diseases with a smile to give her presentation as part of the second topic to be addressed by the conference:
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The doctors' advice was to “let them live a normal life”. They could offer nothing more in view of the severe and irreversible effects of the disease.
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