Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 In a message dated 3/3/2004 5:17:34 PM Eastern Standard Time, bodiedk@... writes: > Tanja Did you printout a list of the full symptoms of EDS. The list can be used like a tick list so you can know what you have applies to EDS ... or not. One site is the orphan rare diseases. I am doing this for my hubby who is applying for SSD. ++++++++++++++++++++++++++++++++++++++ Here is a cut and paste from the Classic type. There are 51 symptoms that can occur... SignList D I S E A S E : Ehlers-Danlos syndrome, classic type aortic root dilatation (Very frequent sign) arachnodactyly (Very frequent sign) autosomal dominant inheritance (Very frequent sign) eczema (Very frequent sign) emphysema/lung cyst (Very frequent sign) flat foot (Very frequent sign) glaucoma/buphthalmos (Very frequent sign) high vaulted/narrow palate (Very frequent sign) hyperelastic skin (Very frequent sign) hyperextensible joints (Very frequent sign) inguinal hernia (Very frequent sign) joint dislocation (Very frequent sign) long foot/arachnodactyly of toes (Very frequent sign) long/large/bulbous nose (Very frequent sign) lordosis (Very frequent sign) pectus carinatum (Very frequent sign) prominent premaxillary region (Very frequent sign) purpura/petichiae (Very frequent sign) scoliosis (Very frequent sign) shagreen patch (Very frequent sign) spina bifida occulta (Very frequent sign) striae (Very frequent sign) talipes-varus/valgus (Very frequent sign) thin skin (Very frequent sign) tongue/gingiva/mucosa anomalies (Very frequent sign) triangular face (Very frequent sign) umbilical hernia (Very frequent sign) vascular hypertension (Very frequent sign) ear cartilage deficiency (Frequent sign) mitral valve prolapse/incompetence (Frequent sign) narrow face (Frequent sign) prematurity (Frequent sign) abnormal dental position (Occasional sign) anodontia/oligodontia (Occasional sign) auricular septal defect (Occasional sign) blue sclerae (Occasional sign) broad nose (Occasional sign) dislocated lens (Occasional sign) epicanthic folds (Occasional sign) keratoconus (Occasional sign) kiphosis (Occasional sign) long rib cage (Occasional sign) mental retardation(degree not assessed) (Occasional sign) microcornea (Occasional sign) microdontia (Occasional sign) myopia (Occasional sign) overlapping toes (Occasional sign) renal tubular defect (Occasional sign) retinal detachment (Occasional sign) short stature/dwarfism (Occasional sign) wasted/poorly muscled build (Occasional sign) ++++++++++++++++++++++++++++++++++++++ QUERY ON : Ehlers-Danlos THERE IS (ARE) 6 RESPONSE(S) Select one of the responses by clicking on it. The active name is the main name of the disease, the names below which are not active, are synonyms or included diseases. Ehlers-Danlos syndrome, arthrochalasic type Ehlers-Danlos syndrome type 7A Ehlers-Danlos syndrome type 7B Ehlers-Danlos syndrome, classic type Ehlers-Danlos syndrome type 1 Ehlers-Danlos syndrome type 2 Ehlers-Danlos syndrome, dermatosparaxis type Ehlers-Danlos syndrome type 7C Ehlers-Danlos syndrome, hypermobile type Ehlers-Danlos syndrome type 3 Ehlers-Danlos syndrome, kyphoscoliotic type Ehlers-Danlos syndrome type 6 Ehlers-Danlos syndrome, vascular type Ehlers-Danlos syndrome type 4, autosomal dominant Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 In a message dated 3/3/2004 5:17:34 PM Eastern Standard Time, bodiedk@... writes: > Tanja Did you printout a list of the full symptoms of EDS. The list can be used like a tick list so you can know what you have applies to EDS ... or not. One site is the orphan rare diseases. I am doing this for my hubby who is applying for SSD. ++++++++++++++++++++++++++++++++++++++ Here is a cut and paste from the Classic type. There are 51 symptoms that can occur... SignList D I S E A S E : Ehlers-Danlos syndrome, classic type aortic root dilatation (Very frequent sign) arachnodactyly (Very frequent sign) autosomal dominant inheritance (Very frequent sign) eczema (Very frequent sign) emphysema/lung cyst (Very frequent sign) flat foot (Very frequent sign) glaucoma/buphthalmos (Very frequent sign) high vaulted/narrow palate (Very frequent sign) hyperelastic skin (Very frequent sign) hyperextensible joints (Very frequent sign) inguinal hernia (Very frequent sign) joint dislocation (Very frequent sign) long foot/arachnodactyly of toes (Very frequent sign) long/large/bulbous nose (Very frequent sign) lordosis (Very frequent sign) pectus carinatum (Very frequent sign) prominent premaxillary region (Very frequent sign) purpura/petichiae (Very frequent sign) scoliosis (Very frequent sign) shagreen patch (Very frequent sign) spina bifida occulta (Very frequent sign) striae (Very frequent sign) talipes-varus/valgus (Very frequent sign) thin skin (Very frequent sign) tongue/gingiva/mucosa anomalies (Very frequent sign) triangular face (Very frequent sign) umbilical hernia (Very frequent sign) vascular hypertension (Very frequent sign) ear cartilage deficiency (Frequent sign) mitral valve prolapse/incompetence (Frequent sign) narrow face (Frequent sign) prematurity (Frequent sign) abnormal dental position (Occasional sign) anodontia/oligodontia (Occasional sign) auricular septal defect (Occasional sign) blue sclerae (Occasional sign) broad nose (Occasional sign) dislocated lens (Occasional sign) epicanthic folds (Occasional sign) keratoconus (Occasional sign) kiphosis (Occasional sign) long rib cage (Occasional sign) mental retardation(degree not assessed) (Occasional sign) microcornea (Occasional sign) microdontia (Occasional sign) myopia (Occasional sign) overlapping toes (Occasional sign) renal tubular defect (Occasional sign) retinal detachment (Occasional sign) short stature/dwarfism (Occasional sign) wasted/poorly muscled build (Occasional sign) ++++++++++++++++++++++++++++++++++++++ QUERY ON : Ehlers-Danlos THERE IS (ARE) 6 RESPONSE(S) Select one of the responses by clicking on it. The active name is the main name of the disease, the names below which are not active, are synonyms or included diseases. Ehlers-Danlos syndrome, arthrochalasic type Ehlers-Danlos syndrome type 7A Ehlers-Danlos syndrome type 7B Ehlers-Danlos syndrome, classic type Ehlers-Danlos syndrome type 1 Ehlers-Danlos syndrome type 2 Ehlers-Danlos syndrome, dermatosparaxis type Ehlers-Danlos syndrome type 7C Ehlers-Danlos syndrome, hypermobile type Ehlers-Danlos syndrome type 3 Ehlers-Danlos syndrome, kyphoscoliotic type Ehlers-Danlos syndrome type 6 Ehlers-Danlos syndrome, vascular type Ehlers-Danlos syndrome type 4, autosomal dominant Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 " Did you printout a list of the full symptoms of EDS. The list can be used > like a tick list so you can know what you have applies to EDS ... or not. > > One site is the orphan rare diseases. I am doing this for my hubby who is > applying for SSD. > ++++++++++++++++++++++++++++++++++++++ > Here is a cut and paste from the Classic type. There are 51 symptoms that can > occur... " ------------------------- Can you please post the address to 'the orphan rare diseases' site? Thank you! I'm putting together my own file for pension, dr. visits, etc... Thanks in advance! -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 Hi Tanja, Ok, let's do it by steps. 1) go to http://www.orpha.net <http://www.orpha.net/> 2) Click on Rare Diseases Orphan Drugs 3) Type in Ehlers-Danlos and hit enter You should the the following: Ehlers-Danlos <http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat & Form=Pat & PatId=404 4.0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20 & PHPSES SID=aa86ae462cbae2abd8db540e23152980> syndrome, arthrochalasic type Ehlers-Danlos syndrome type 7A Ehlers-Danlos syndrome type 7B Ehlers-Danlos <http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat & Form=Pat & PatId=612 ..0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20 & PHPS ESSID=aa86ae462cbae2abd8db540e23152980> syndrome, classic type Ehlers-Danlos syndrome type 1 Ehlers-Danlos syndrome type 2 Ehlers-Danlos <http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat & Form=Pat & PatId=404 5.0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20 & PHPSES SID=aa86ae462cbae2abd8db540e23152980> syndrome, dermatosparaxis type Ehlers-Danlos syndrome type 7C Ehlers-Danlos <http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat & Form=Pat & PatId=404 1.0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20 & PHPSES SID=aa86ae462cbae2abd8db540e23152980> syndrome, hypermobile type Ehlers-Danlos syndrome type 3 Ehlers-Danlos <http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat & Form=Pat & PatId=404 3.0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20 & PHPSES SID=aa86ae462cbae2abd8db540e23152980> syndrome, kyphoscoliotic type Ehlers-Danlos syndrome type 6 Ehlers-Danlos <http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat & Form=Pat & PatId=404 2.0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20 & PHPSES SID=aa86ae462cbae2abd8db540e23152980> syndrome, vascular type Ehlers-Danlos syndrome type 4, autosomal dominant 4) Click on Ehlers-Danlos syndrome, hypermobile type 5) Click on Clinical Signs You should get this abnormal scarring (Very frequent sign) autosomal dominant inheritance (Very frequent sign) dislocated hip (Very frequent sign) elbow dislocation (Very frequent sign) hyperelastic skin (Very frequent sign) hyperextensible joints (Very frequent sign) wormian bones (Very frequent sign) metatarsus adductus (Frequent sign) wrist anomalies (Occasional sign) Hope this helps you Tanja! Let me know if you have further questions, OK? Love Lana Quote Link to comment Share on other sites More sharing options...
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