Rare Disease Day 2017

img_4173This year for rare disease day I asked people living with rare disease to share a photo of themselves and their diseases/disorders/genetic illness. Aiming to raise awareness for rare diseases can be challenging because they are just that, rare. I hope that you enjoy this slideshow of us rarities.

To learn more about the diseases/disorders/genetic illness please find below the descriptions of some of the rare/disorders/genetic illnesses/complex diseases mentioned. Happy rare disease day. Let’s make the invisible visible. Together with collective voices we can make a difference.

Are you or a loved one living with a rare disease? Want to share your story!? Now is your chance! I am conducting interviews to help you share others stories and raise awareness for rare disease. Please feel free to email at annawerrun@gmail.com if you are interested. Interveiw is done VIA email. You will be featured on my blog. Hopeful always. Let’s help raise awareness for rare disease! Check out the other interviews I have done here (some of the interviews that have been conducted thus far are of both rare diseases in addition to invisible and chronic illness). Caretakers can be interviewed and chronic/rare diseases warriors. https://annawerrunblog.wordpress.com/interviews/

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This year for rare disease day I asked people living with rare disease to share a photo of themselves and their diseases/disorders/genetic illness. Aiming to raise awareness for rare diseases can be challenging because they are just that, rare. I hope that you enjoy this slideshow of us rarities.

In hopes of raising awareness for rare diseases on rare disease day February 28 2016, I set out to crest a rare disease slide show. I made one a few days before Rare disease day and am currently working on the second one. You can find the second rare disease video here https://www.youtube.com/watch?edit=vd&v=dj9nO9g5ssY

To learn more about the diseases/disorders/genetic illness please find below the descriptions of some of the rare/disorders/genetic illnesses/complex diseases mentioned. Happy rare disease day. Let’s make the invisible visible. Together with collective voices we can make a difference.

Are you or a loved one living with a rare disease? Want to share your story!? Now is your chance! I am conducting interviews to help you share others stories and raise awareness for rare disease. Please feel free to email at annawerrun@gmail.com if you are interested. Interveiw is done VIA email. You will be featured on my blog. Hopeful always. Let’s help raise awareness for rare disease! Check out the other interviews I have done here (some of the interviews that have been conducted thus far are of both rare diseases in addition to invisible and chronic illness). Caretakers can be interviewed and chronic/rare diseases warriors. https://annawerrunblog.wordpress.com/interviews/

Scleroderma is a group of rare diseases, causing connective tissue to harden, connective tissue is in your skin, blood vessels, joints, ligaments, tendons and organs. You can learn more about scleroderma here https://www.hopkinsscleroderma.org/scleroderma/
Vascular Ehlers Danlos Syndrome (VEDS) is considered the most severe form of Ehlers Danlos syndrome. It causes spontaneous blood vessel and organ rupture. EDS causes frequent joint dislocations and subluxations. It is an inherited connective tissue disorder. Learn more about VEDS here http://ehlers-danlos.com/vascular/
Hyper-mobility Type EDS (HEDS) is a more common form of EDS within the EDS classifications. HEDS is an inherited connective tissue disorder.
HEDS causes joint dislocations and subluxations, severity varies. HEDS is more then just joints. You can learn more about HEDS here http://ehlers-danlos.com/hypermobility/
Diffuse scleroderma cause systemic sclerosis (sclerosis means the hardening of tissue). Learn more here https://www.sclero.org/scleroderma/types/systemic/diffuse/a-to-z.html
CREST (limited scleroderma) develops gradually and usually the hands, lower arms and legs, fingers, toes, and sometimes the face. Learn more here http://www.mayoclinic.org/diseases-conditions/crest-syndrome/basics/symptoms/con-20031524
Synringobulbia with Syringomyelia is a rare condition the causes fluid filled tubular cysts (synrix) in the spinal cord (central and cervical). The synrix extending into the brainstem is when syringobulbia results. Learn more about these complex conditions here http://patient.info/doctor/syringomyelia-and-syringobulbia
SVT (supraventricular tachycardia) is a rapid heart beat the includes beats equal to 100 BPM (beats per minute) or higher. http://www.emedicinehealth.com/supraventricular_tachycardia/article_em.htm
Blounts disease is where the inner bone of the shin bone fail to develops normally. This happens in young children and adolescents. Causes of Blount disease are unknown. Learn more about Blounts disease here https://medlineplus.gov/ency/article/001584.htm
Eagles Syndrome causes reccurent pain of the jaw, threat and tongue. Pain is triggered by swallowing the styloid is affected (styloid serves as a connection for muscles into a part of the bone in a skull). In Eagles Syndrome it causes the styloid to become longer than it should be thus resulting in pain. Usually corrective surgery can be done. Learn more about Eagles Syndrome here. http://emedicine.medscape.com/article/1447247-overview
Sarcoidosis causes inflammation, abnormal masses and nodes. Pulmonary Sarcoidosis is causes inflammation in the lungs and lymphatic systems. You can learn more about Sarcoidosis here http://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/dxc-20177970
Gastroparesis this translates into lames terms stomach paralysis. Learn more http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971
Chiari Malformation is a structural defect in the cerebellum, this part of your brain controls balance. Learn more here https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet

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