Question

Should Tricho-Rhino-Phalangeal Syndrome (TRPS) Be Eligible And Qualify To Get SSI And Medicaid From SSA?
There has been more than 192 distinct Ectodermal Dysplasia Syndrome (EDS) disorders that has been described up to this present date. Trichorhinophalangeal Syndrome Type I (TRPS-I/TRP-I) is an extremely rare genetic multi-system disorder syndrome which is a complex Ectodermal Dysplasia Syndrome (EDS). TRPS is one the rarer forms of EDS. EDS is an extremely rare genetic syndrome. Tricho-Rhino-Phalangeal Tricho - Hair Rhino - Nose Phalangeal - Finger / ToeThere are 3 types of Trichorhinophalangeal (TRPS). 1. Trichorhinophalangeal Type I (TRPS-I/TRP-I) 2. Trichorhinophalangeal Type 2 (TRPS-II/TRP-II) / Langer-Giedion Syndrome (LGS) 3. Trichorhinophalangeal Type 3 (TRPS-III/TRP-III) / Sugio-Kajii Syndrome (SKS) TRPS causes you to have unusual facial features (bulbous rounded [pear-shaped] nose, thin upper lip, long, flat area between nose and upper lip [philtrum]), thin nails, small nails, cone-shaped epiphyses (CSEs) [coning of phalangeal epiphyses in fingers and toes]. TRPS can also cause uncontrolled shaking of fingers, micrognathia (abnormally small jaw), high-arched palate, missing chin bone, dental anomalies (crowded crooked teeth, under-bite, etc), short height, unusually big prominent ears, 1/2 sparse thin eyebrows (both outer lateral eyebrows are missing), thin sparse eyelashes, thin fine sparse scalp hair, curved fingers and/or toes being abnormally short (brachydactyly), wide hips, waddle gait, flat feet, weak unstable ankles, gun-stock elbows, speech Disabilities, and etc. People that have TRPS can have joint problems like stiffness, laxity [extremely extensible ligaments and tendons] [hyper-mobility], swelling lateral displacement of the patella (kneecap), and overall pain. The degenerative process in TRPS can resemble early arthrosis. People with TRPS can have problems with back, knees, feet, degenerative hip disease, and can also have problems with arthritis, osteoarthritis, and upper respiratory tract infections (URTI or URI). People with TRPS-II/TRP-II [Langer-Giedion Syndrome (LGS)] can have mild to moderate learning difficulties and multiple bony growths (exostoses). There are people with TRPS including myself that get Supplemental Security Income (SSI) and Medicaid.When I was born, Trichorhinophalangeal Syndrome (TRPS-I/TRP-I) took a SEVERE turn in me causing me to have various other ADDITIONAL physical Disabilities. My late mother also had Trichorhinophalangeal Syndrome Type I (TRPS-I/TRP-I).The way my hands and fingers are, uncontrolled shaking of my fingers, and the coning of my phalangeal epiphyses makes doing things with my fingers and hands to be difficult or impossible to do in terms of grasping and fingering of fine and gross movements which falls in the SSA's Bluebook 1.00 Musculoskeletal System - Adult Category and in the 1.02 Section of Major dysfunction of a joint(s) (due to any cause which is the original reason why I applied and got Supplemental Security Income (SSI) and Medicaid on my FIRST TRY.This is a picture of an unidentified person's fingers affected with TRPS which is how my fingers and hands look.http://www.scielo.br/img/revistas/rbr/v48n4/a09fig01.jpgThis is a picture of an unidentified person's feet and toes affected with TRPS Type 2 which is somewhat close in how my feet and toes look.http://upload.wikimedia.org/wikipedia/commons/4/40/Langer-Giedion_syndromeFeet.JPGUnidentified person in article is how I look in TRPS facial features and TRPS hair. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1001811/pdf/annrheumd00268-0045.pdfQuestion 1: Based on the descriptions of Trichorhinophalangeal Syndrome (TRPS) and TRPS photos, should people with TRPS Type 1, or with TRPS Type 2, or with TRPS Type 3 be eligible and qualify to get Supplemental Security Income (SSI) and Medicaid from the Social Security Administration (SSA)???Question 2: Why or Why Not???Thank You!Due to various acquired physical Disabilities, I have a Permanent Handicapped Parking Space State Permit and I use a quad-cane, a seated Rollator Walker, a manual Wheelchair (WC) and two Power Mobility Devices (PMDs) which is a Power Wheelchair (PWC) and a Power Operated Vehicle (POV) which is a 4-Wheel Electric Handicapped Scooter. I also have a Handicapped-Conversion Motor Vehicle with a Power-Lift. The SSA knows about my various acquired physical Disabilities and that I use a PMD-PWC and a PMD-POV for mobility assistance. *Both me and my only child are Social Security Administration Registered-Certified-Recognized Disabled Persons With Disabilities.* I am also a Registered-Certified-Recognized Member of the Ectodermal Dysplasias International Registry.* I am also a Registered-Certified-Recognized Member of the National Foundation of Ectodermal Dysplasias* --- *I am proud to be a "Gimp", a "Crip", a "Cripple", a "Capper", a "Wheelie", a "Wheeler", a "Freak ", and a "PWD Freak"!* --- *AFO WC PMD PHPSSP RCRMEDIR RCRMNFED MLRCRD SSA PD-PWD*---*PWDRHIP*---*Wowasakeikcupi! * Creator-Originator of the phrases of - Pulling PWD Rank - PWD Insiders Language - Person With Disabilities Rank Has Its Privileges - PWDRHIP*.
Posted 3 years ago in Other by ziplord

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