_{I love to nap}

I love to nap, do you? Napping is part of my daily chronic illness management routine, alongside my relaxation. Most of the time it works enough for me to be able to enjoy the rest of the day without being haggard!

After reading the following article in the Guardian by Jennifer Ackerman about napping my mind is made up… | 

_{The Guardian – lifeandstyle -napping-guide-health-wellbeing Tue 27 Jan 2009} 

The Guardian – lifeandstyle -napping-guide-health-wellbeing

Press to see more Images like the one above from googlygooeys – lack of sleep the vicious cycle   >  by ponggo | May 31, 2011

About: googlygooeys.com

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Thank you for reading

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Visit our About FibroFlutters page

Visit our Rare Disease Advocacy page for our rare disease advocacy arm – ZebraStrutters

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_{FibroFlutters / ZebraStrutters:}

We are a Patient Advocacy Organisation & online social media communications network. 

Our services are for people affected by chronic illnesses and rare disease. This includes patients, care providers, health professionals and those within the medical healthcare and life-science related industries. #notjustpatients.

Working to help develop, nurture, and help to create a multidisciplinary approach to all aspects of medical healthcare so that chronic illness & rare disease patients can receive the type of care and treatments that they need.

With a focus on Ehler’s Danlos Syndromes, Pigmented Villonodular Synovitis, Fibromyalgia but, also, including musculoskeletal disorders and associated rare diseases.  There are over 300 undetermined musculoskeletal conditions with many of them causing high rates of work absenteeism and disability. 

_{The work we do}

The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.

Our efforts also include advocating for the need to improve patient engagement processes within the drug development process and research and development.  Hoping for the better development of therapies and treatments within the pharma, medical, and clinical environments. For instance, involving patients and teams of multi-stakeholders from across the health, medical and clinical research landscapes including academia and pharma.

Providing relevant health information from respected and reputed resources is important to ensure that people are educating themselves from proper places. A better way to provide support and relief to patients, their families, and their caregivers.  This also aids the advancement of public education by raising awareness of the need for multi-disciplined patient healthcare pathways, and access to care. Such ‘approaches’ which can help to change patients’ lives for the better by meeting their needs.

We advocate and encourage more efficient patient engagement practices with a view to the better development of therapies and treatments within the pharma, and clinical, environments. Working on projects and in partnerships, to enhance patient engagement, and speak at varying events to spread the mission of FibroFlutters.

_{Why we advocate for a multi-disciplined approach to our healthcare.}

Patients with chronic and rare conditions are left to manage life with multiple chronic disorders and very little healthcare support. Usually, only getting to see one specialist at a time when the conditions run in line with each other sharing comorbidities etc.  We need our health looked at holistically and is why we advocate for a multi-disciplined approach to our healthcare.

To develop better treatments, products and patient healthcare we believe that the collaboration of minds from within pharma, medical, clinical and life-sciences can provide optimal results. Engage with patients and add the patient voice and those results would be more than optimal!

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