Basal Cell Carcinoma Nevus Syndrome/ Gorlin Syndrome - Survey

Your personal information, such as name, address, phone, email, etc, will be kept confidential.  THANK YOU VERY MUCH!

When were you diagnosed with BCCNS?

How old were you at that time?

How old are you now?

Are you Male or Female? Male  Female                                          

Is there any family history of BCCNS? Yes  No

If yes, how many people show symptoms and how are they related to you?

Have you had any Basal Cell Carcinomas?  Yes  No

If yes, approximately how many, and what part of your body?

         

Do you have, or have you had any of the following symptoms? Please indicate Yes or No, and indicate your age when it first occurred.

Yes No  Age Palmer Pits - Little "holes" (open pores) in the palms of the hands.
Yes No  Age Jaw Cysts   -  Odontogenic keratocysts associated with the mandible.
Yes No  Age Medulloblastoma - A brain tumor.
Yes No  Age Short Metacarpals -  Generally the 4th (bone between the wrist and first knuckle).
Yes No  Age Hyperparathyroidism - A condition due to excess parathyroid hormone in the body.
Yes No  Age Calcification of the Falx -   Hardening of a partition like fold of the brain
Yes No  Age Scoliosis -  A lateral curvature of the spine
Yes No  Age Cleft Lip -  Congenital fissure of the lip and or palate.
Yes No  Age Hypothyroidism -   Deficient activity of the thyroid gland
Yes No  Age Bifid Rib -   Divided into two parts
Yes No  Age Glaucoma -   A disease of the eye marked by increased pressure within the eyeball
Yes No  Age Bone Cysts -  Cysts on or in the bone.
Yes No  Age Excessive Skin Tags - Many "tag like" external growths.
Yes No  Age Frontal Bossing - Prominent forehead.
Yes No  Age Planters Pits - Little "holes" (open pores) on the soles of the feet.
Yes No  Age Spontaneous Fractures -   Fractures without apparent external influence, force, or cause.
Yes No  Age Cataracts -   A clouding of the lens of the eye or of its surrounding transparent membrane.
Yes No  Age Seizures -  A sudden attack related to a disease or symptoms ( e.g. epileptic convulsion)
Yes No  Age Kyphosis -  Deformity of the spine characterized by excessive flexion; the concavity of the spinal curve bends forward.
Yes No  Age Cardiac Tumors -   Heart tumors.
Yes No  Age Pulmonary Matastises -   Spread of cancer cells (that originated somewhere else in the body) to the lungs.
Yes No  Age Ovarian Fibromas - A benign tumor (derived from fibrous connective tissue) of the ovary.
Yes No  Age Sarcomas -  A malignant neoplasm arising in tissue of mesodermal origin.
Yes No  Age Colon Polyps -   Benign or malignant bulging growths from the lining of the colon (large intestine).
Yes No  Age Stomach Polyps -   Benign or malignant bulging growths from the lining of the stomach.
Yes No  Age Ocular Defects -   Cataracts, corneal opacities, strabismus, nystagmus & glaucoma.
Yes No  Age Fused Vertebrate -   Abnormally joined bones in the spine.
Yes No  Age Hypertelorism - Widely spaced eyes.
Yes No  Age Prognathism -  Having the jaws projecting beyond the upper part of the face.
Yes No  Age Hydrocephalus -  An  increase in the amount of  fluid within the cranial cavity
Yes No  Age Deafness - Loss of hearing.
Yes No  Age Blindness - Loss of sight.
Yes No  Age Brain Tumor - Self explanatory.
Yes No  Age Bone Anomalies   - A structural abnormality of the bone (e.g. Bifid ribs - divided into two parts.

  .

Please list any other symptoms you have which have been pathologically proven to be related with BCCNS.

                                                    

Please list any symptoms & diagnosis of other health problems you may have (anything at all).

Any additional comments that you would care to make are greatly appreciated.

 

Optional and Confidential Information:

Tell us how to get in touch with you.  This information may be used to advise you of things like updates to our website (including survey statistics), and new developments in research: (Please keep in mind that people tend to change their Email address somewhat frequently.)

Name
Address
Address
City, State, Postal Code
Country
Phone
Email Address
I would like to be considered as a potential participant in future research studies.

Copyright © 2007 BCCNS Life Support Network. All rights reserved.