[2015] Shannon McGuinness: Parry-Romberg Syndrome

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[2015] Shannon McGuinness: Parry-Romberg Syndrome

Parry-Romberg Syndrome

Shannon McGuinness

Causes: -Unknown -Possibly- Disturbance of Fat - Trauma - Viral Infection - Endocrine Disturbances - Heredity - Autoimmunity - Inflammation of Nerves

Diagnosis: -Identification of Characteristic Symptoms -Detailed Patient History -Thorough Clinical Evaluation -Specialized Tests (MRI, Biopsy, etc. depending on symptoms)

Treatment: -Dependent on Symptoms -May Require Specialists -Surgery (Cosmetic / Corrective) -Monitoring -Fat of Silicone Injections -Grafts -Bone Implants -Drug Therapy (prevent, reduce, control seizures | surpress immune system)

Age Range: -Majority- Before age of 20

Fatal?: -Can be in very rare situations -Suation- -Progressive Cerebral Hemisphere Atrophy -Fatal Brain Stem Involvement (Both cause severe problems with vital parts of the body which in time can cause death)

Affected Systems / Organs & How: -Integumentary System -Atrophy (shrinks and thins), discoloration -Muscular System -Atrophy, muscle spasms -Skeletal System -Depressions, hollows, deformations -Nervous System -Seizures, headaches,abnormal sensations like prickling

Home Remedies / Alternative Medicine: -As far as research goes, there are no home remedies or alternative medicines that are proven to help this disease

Symptoms: {vary for each individual} - Common ones include: -Atrophy -skin, fat, muscle, connective tissue, bone -progression depends on the age of onset (younger = worse) - Extended Atrophy Progression -the atrophy can reach the arm, trunk, and leg on affected side -Sunken side of face -normally left side -can form a distinct line on face -Abnormal skin -thickened and hardened (sclerosis) -darkening / lightening -vitiligo -Hair -bald or bleached spots (eyelahes, eyebrows, and scalp) -Oral Cavity -upper lip, side of tongue, mandible may be short -involuntary muscle contractions when chewing -Orbital -eye sits back further than normal -loss of fat lining the cavity -loss of bone -Neurological -headaches, light sensitivity, nausea, pupillary abnormalities, epileptic seizures, abnormal sensaations -Depression -Anxiety

FACTS: 1. It's a very rare disease 2. It's thought to be rare partial because it's so hard to identify and there are so many variations that it goes undiagnosed or misdiagnosed 3. Although research is scattered, it seems to effect women more often 4. Although it mostly effects before your 20's, any age can experience onset 5. It effects everyone in a unique way; Patterns are hard to find

Works Cited"Parry Romberg Syndrome." National Organization for Rare Disorders. NORD, 2013. Web. 25 Nov 2015.National Institute of Neurological Disorders and Strokes. Parry-Romberg Information Page. 25 Jan 2011. Web. 24 Nov 2015.Kaplan MJ. Localized Fibrosing Disorders: Linear Scleroderma, Morphea, and Regional Fibrosis. Emedicine Journal, 19 Aug 2011. Web. 26 Nov 2015.Chapman MS, Peraza JE, Spencer SK. Parry-Romberg Syndrome with Contralateral and Ipsalateral Extremity Involvemnet. J Cutan Med Surg. 1999; 260-262.


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