Wanted to say 'farewell' to PC for a little while...

I noticed your absence, Pinto. I've always enjoyed reading your posts and have silently appreciated your perspective. I hope all turns out well for you and your niece. Best of luck to you.

Be sure to come back.

 

As one who has been in a similar circumstance, I offer you my deepest condolences right now. I know nothing of the disease, either, but I hope everything works out for the best!

*hugs*

 

Not to feed your egocentric delusions, Natalie, but I kinda wondered where you'd gone. Sorry to hear your news. All the best, and come back for a visit sometime. Who knows, you might find valuable information from someone here.

 

It's good of you to be so concerned and involved with a niece-in-law. Divorce doesn't sever all ties, does it? I'll miss your moderating words that have often shown how there is another path than just the two opposite tacks we usually fall into here. Bonne chance!

 

Natalie -

I'm so sorry to hear about your niece-in-law. I'll miss your view on things while you're gone.

If you get a chance, please drop in once in awhile and keep us posted on how she's doing and how you're doing.

Mike

 

I am so sorry to hear of your niece's diagnosis. When you love someone they're still family no matter what the title. I am sending positive, healing thoughts your way. And please remember to take care of yourself while you're taking care of everone else too...

 

What is Neurofibromatosis?
The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation (change) in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatoses. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus (ringing noise in the ear) and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.

Is there any treatment?
Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors; however, there is a chance that the tumors may grow back and in greater numbers. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy. For NF2, improved diagnostic technologies, such as MRI, can reveal tumors as small as a few millimeters in diameter, thus allowing early treatment. Surgery to remove tumors completely is one option but may result in hearing loss. Other options include partial removal of tumors, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting. Genetic testing is available for families with documented cases of NF1 and NF2. New (spontaneous) mutations cannot be confirmed genetically. Prenatal diagnosis of familial NF1 or NF2 is also possible utilizing amniocentesis or chorionic villus sampling procedures.

What is the prognosis?
In most cases, symptoms of NF1 are mild, and patients live normal and productive lives.


What research is being done?
Several years ago, research teams located the exact position of the NF1 gene on chromosome 17. The product of the NF1 gene is a large and complex protein called neurofibromin. One portion of this protein is similar to a family of proteins called GAP (guanosine triphosphatase-activating protein). Scientists have demonstrated that GAP proteins play a significant role in tumor suppression in certain cancers. The similarity of the NF1 protein to GAP proteins suggests that the NF1 protein may have a similar switching role in the development of neurofibromas. Scientists theorize that defects in the gene may lessen or inhibit the normal output of its protein and allow the irregular cell growth that may lead to tumor development. Intensive efforts have led to the identification of the NF2 gene on chromosome 22. The NF2 gene product is a tumor suppressor protein. Basic studies in molecular genetics may lead one day to nonsurgical or pharmacologic treatments aimed at retarding or suppressing tumors associated with the neurofibromatoses. The Interinstitute Medical Genetics Research Program at the NIH Clinical Center conducts NF2 family history research. Using specimens from some of the families, scientists have isolated and sequenced the NF2 gene and have described two different patterns of clinical features in NF2 patients. Investigators are continuing to study these patterns to see if they correspond to specific types of gene mutations.

Select this link to view a list of studies currently seeking patients.

Organizations

Children's Tumor Foundation
95 Pine Street
16th Floor
New York, NY 10005
[email protected]
http://www.ctf.org
Tel: 800-323-7938 212-344-6633
Fax: 212-747-0004

National Cancer Institute (NCI)
National Institutes of Health, DHHS
6116 Executive Boulevard, Ste. 3036A, MSC 8322
Bethesda, MD 20892-8322
[email protected]
http://cancer.gov
Tel: 800-4-CANCER (422-6237) 800-332-8615 (TTY)


Neurofibromatosis, Inc. (NF Inc.)
P.O. Box 18246
Minneapolis, MN 55418
[email protected]
http://www.nfinc.org
Tel: 301-918-4600 800-942-6825
Fax: 301-918-0009

Acoustic Neuroma Association
600 Peachtree Parkway
Suite 108
Cumming, GA 30041
[email protected]
http://www.anausa.org
Tel: 770-205-8211 877-202-0239
Fax: 770-205-0239/877-202-0239


IRSA (International RadioSurgery Association)
P.O. Box 5186
Harrisburg, PA 17110
[email protected]
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809



Related NINDS Publications and Information

Neurofibromatosis Fact Sheet

Neurofibromatosis fact sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).

NEUROBIOLOGY OF DISEASE IN CHILDREN: Neurofibromatosis
NEUROBIOLOGY OF DISEASE IN CHILDREN
Defining the Future of Neurofibromatosis Research
Summary of an NINDS workshop, "Defining the Future of Neurofibromatosis Research," May 4-5, 2000.

 

Keep your chin held high. You'll be missed. Remember you can't help anyone if you don't take care of yourself first, so keep some time for yourself each day.

God bless.

 

Sorry to hear the news, Pinto. You know you'll be missed here. I hope you'll be back occasionally.

Vince

 

You will be missed during your time away from us at PC. Hope that your niece will make it through her illness and be a happy healthy little girl.

 

All the best wishes Natalie....



- Joe

 

Hope all goes well for your neice - family (although confusing at times) comes first.

Ed

 

We'll think positive thoughts for you and your niece.

 

This is my first post on Priuschat, although I've been a reader of the forum since June.

Your forum contributions were always on my "must read list", and I did miss seeing them these past several weeks. You brought a fresh perspective to the forum, and shared your excellent automotive-related knowledge in a delightful manner. Thank you for that!

I wish both you and your niece the very best, and do hope that you'll check in here with a post from time to time to let us know how both of you are faring.

Alan

 

aww, so sorry to hear that. i noticed your absence.

well i hope all works out for the best and you know you're always welcome back.

 

As an avid lurker here on PC, (read "voyeur") I can say without question that you will be missed. Articulate, well thought out posts are a rarity in cyberspace, though in my experience, PriusChat members seem to do better than most. And yours have always been among the best of this most auspicious crew.

Best wishes to you and your niece! Medical science is amazing. My estranged spousal unit is facing breast cancer at the moment, and it's amazing what they have invented these last few years for treatment. No doubt, treatments for your niece's issues exist -- or will shortly -- which will assure her continued quality of life.

We all have high hopes and wish her the best so you can come back and interact with us all again.

Best,

Dan

 

Sorry to hear that ... its always trying when a family member is sick (and I think you're right, a niece is still a niece even if there's a divorce). We'll miss you here, but first things first.

We'll all direct our good thoughts, prayers or wishes your way.

 

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