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Home
About Us
Medical Leadership
Board Members
News
Volunteer
Contact Us
Conditions
Scleroderma
Degos Disease
Degos Registry
Degos Disease Support Network
Patient Support
Patient Stories
Research
Publications
Med Talks
Education
Interprofessional Education
Program Replication
Collaboration
Student Involvement
Events
Cruise for a Cure
Fall Event
Sponsors
Current Fundraisers
Support Us
Podcast & Related Articles
Degos Disease Patient Registry
First Name
Required
Middle Name
Last Name
Required
Date of Birth
Required
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AM
PM
Sex
Required
Male
Female
Address
City
State
Zip Code
Country
Required
Contact Phone Number
Email
Color of Skin
Required
Albino
White
Pink
Yellow
Tan
Brown
Black
Other
Color of Eyes
Required
Blue
Green
Brown
Hazel
Other
What Childhood Illnesses did you have?
Do you have any diseases affecting your circulatory system (heart and blood vessels)?
None
Coronary Artery Disease (CAD)
Hypertension
Peripheral Vascular Disease (PVD)
Congestive Heart Failure (CHF)
Other
Describe (if Other
Do you have any other diseases effecting your skin?
None
Acne
Alopecia Areata
Atopic Dermatitis
Cicatricial Alopecia
Epidermolysis Bullosa
Ichthyosis
Lichen Sclerosus
Pachyonychia Congenita
Pemphigus, Psoriasis
Raynaud’s Phenomenon Rosacea
Scleroderma
Viitiligo
Other
Do you have any other chronic diseases or medical conditions?
At what age did you develop your first skin lesion?
Required
How many skin lesions do you have right now?
Required
1 -19
20 - 39
40 - 59
60 or more
Other than classic porcelain white macules with red edges, what are the other characteristic(s) of your Cutaneous Degos skin lesions?
Required
None
Itching
Burning
Swelling
Pain
Redness
Drainage
Ulceration
Other
Did you have a punch biopsy done to diagnose your Cutaneous Degos?
Required
Yes
No
What treatment(s) have you used for your skin lesions?
Required
None
Hydrocortisone creams
Steroids creams
Moisturizing Creams
Aspirin
Dipyridamole
Anticoagulants
Ticlopidine
Pentoxifylline
Prostaglandin E1, and Interferon alpha-2a
Intravenous Immunoglobulin
Infliximab
Corticosteroids
Eculizumab
Treprostinil
Other
Did you travel out of your country in the year prior to diagnosis?
Required
Yes
No
Do you have any symptoms of Systemic disease?
No symptoms of systemic disease
Abdominal pain
Bowel perforation
Diarrhea
Chills
Fever
Nausea
Vomiting
Sepsis
Aphasia or difficulty communicating
Eye issues
Seizures
Stroke
Paralysis
Other
Describe (if other)
What internal organs or organ systems are involved or suspected to be involved?
Musculoskeletal system; bones and muscles
Circulatory system; Heart and blood vessels
Digestive system; Bowel
Endocrine system
Urinary system
Lymphatic system
Immune system
Respiratory system; Lungs
Nervous system; Brain and spinal cord
Reproductive system
What treatment(s) have you used for your Systemic Degos disease?
Required
None
Hydrocortisone creams
Steroids creams
Moisturizing Creams
Acetylsalicylic acid
Aspirin
Dipyridamole
Persantine
Anticoagulants
Ticlopidine
Ticlid
Pentoxifylline
Trental
Pentoxil
Prostaglandin E1
Alprostadil
Interferon alpha-2a
Pegasys
Intravenous Immunoglobulin
Infliximab
Remicade
Corticosteroids
Treprostinil
Remodulin
Eculizumab
Soliris
Tocilizumab
Actemra
Other
Physician - Caring for your Degos disease?
Required
Physician's email
Physician's Institution
Additional Comments
