Connective Tissue Disorders
I would say to anyone that has an illness or is a little different, you’re not alone and even though it can be extremely limiting and frustrating at times. It can be pretty cool to be different sometimes and have a story to tell - Chloe Berry
image by: Irish EDS & HSD
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Hannah’s story- Connective tissue disorders
Unfortunately, it often takes people years or even decades to get a diagnosis and the help they need. This is a relatively uncommon group of conditions, so many health professionals might not have the answers for you straight away. This can be extremely frustrating. Most people with this condition will have stories of health professionals not listening to their concerns, and telling them their pain is in their head. Some people with EDS have been diagnosed with “fibromyalgia” or “chronic fatigue” at some point.
Resources
Connective Tissue Disease and the impact it has on my daily life
I hate having to take all of my tablets all of the time, they taste disgusting and it’s horrible having to revolve my life around medication. However, it’s not doom and gloom though as I love learning about my condition, the different parts of the body and how it works. This is something I wouldn’t have learnt if I didn’t have this disease. I like watching having my bloods taken, and watching the screen as they scan my heart and kidneys. It is pretty fascinating.
Hereditary disorders of connective tissue: A guide to the emerging differential diagnosis
Diagnostic accuracy may improve the quality of life for patients, even those with disorders for which no major treatment has yet been developed.
Latest advances in connective tissue disorders
There are common clinical and serological features with some patients having multiple overlapping connective tissue disorders. The latest advances include new approaches to therapy, including more focused utilization of existing therapies and the introduction of biological therapies in SLE, more precise protocols for assessment of severe disease manifestations such as in interstitial lung disease and pulmonary artery hypertension in scleroderma, new antibodies for disease characterization in myositis and new approaches to patient assessment in Sjögren’s syndrome.
Mixed Connective Tissue Disease: Making Friends With My Invisible Illness
Today, when somebody asks me why I have this or that symptom, I can finally give them an answer. I can put a name to the strange collection of pains and illnesses that have been a constant companion. I can say that I have Mixed Connective Tissue Disease, an autoimmune condition.
Spotlight on Mixed Connective Tissue Disease
When looking at the big picture, we must remember that mixed connective tissue disease falls within the larger category of autoimmune diseases, of which there are over 100 individual diseases.
The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET
The COVID-19 pandemic has brought many challenges to the already vulnerable communities of patients with rCTDs. However, many of these challenges can be translated into positive lessons to be applied in the post-COVID era. One of the main positives to emerge from the pandemic is surely the use of eHealth and telemedicine in the provision of care to patients with rCTDs.
What are Heritable Connective Tissue Disorders?
There are more than 200 Heritable Connective Tissue Disorders that can affect the tissues between the cells of your body that give tissues form and strength. All of these diseases are directly related to problems in genes that are responsible for building connective tissues. The disorders are called “heritable,” because they are passed on from parent to child.
What Is Undifferentiated Connective Tissue Disease? Here’s How to Know If You Have It
This autoimmune disease can share symptoms with other chronic conditions, but it’s a distinct condition that is often challenging to diagnose.
Hannah’s story- Connective tissue disorders
On the outside I look like a normal healthy 30-something year old. Many people don’t know that I have a connective tissue disorder called Ehlers Danlos Syndrome, hypermobility type (hEDS).
Connective Tissue Disorders Australia
The mission of Connective Tissue Disorders Australia is to help patients access medical resources by contributing and/or setting up the following; Clinics & Clinicians Registry...
MCTD
MCTDfoundation.org is a non-profit, online gathering place, for those living with the Mixed Connective Tissue Disease (MCTD), their friends, families, support systems and medical providers. We strive to present the most current information available on the overlap autoimmune diseases that comprise MCTD, as well as available treatment options.
MedlinePlus
It is like a "cellular glue" that gives your body parts their shape and helps keep them strong. It also helps some of your tissues do their work. It is made of many kinds of proteins. Cartilage and fat are types of connective tissue.
NORD
Individuals with MCTD have symptoms that overlap with those of two or more inflammatory rheumatic diseases. These diseases, in which autoimmunity, excess immune activation and inflammation are hallmarks, include systemic lupus erythematosus, polymyositis, scleroderma and rheumatoid arthritis.
Physiopedia
The connective tissue disorders (CTDs) form a large heterogeneous group of conditions that are linked by a disease process that primarily involves the connective soft tissues of the body and often the vasculature too, due to shared structural proteins, such as collagen and elastin. There are over 200 documented disorders of connective tissue.
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