Hello! Help or assist please. At my grandson a congenital pathology sindr...

[Lyudmila]

Hello! Help or assist please. At my grandson a congenital pathology of syndrome proteja. To Him 2 years.
7 operations in areas are made: thoracal and cervical, and also the left top extremity. Prompt, that it is possible to undertake in this situation. What treatment and methods of strengthening of lymphatic system for prevention of operations exists. Or it is better to not interfere with an organism of the child? We wait the answer. Thanks.

[Talanova E.J.]

Dear Lyudmila!
Unfortunately, your question behind frameworks internet-conferences. Your case provides necessity of internal consultation of the doctor (not genetics!), treatment of similar cases had experience, with detailed treating a case history of your grandson. I can result or bring only links to the American fund based or founded;established at participation of the expert, for the first time described syndrome proteja as individual disease. The fund noncommercial, in its or his problems or tasks enters as search of investors and sponsors, and nauchno-educational job - first of all, with relatives of patients. Perhaps, you will manage to find there useful contacts. The address of fund: Proteus Syndrome Foundation, 6235 Whetstone Dr., Colorado Springs, CO 80918, U. S. A.; Contact person: Kim Hoag; TEL: 719 264 8445; Email: Abscit@aol. com; United Kingdom Chapter, 46 The Croft, Hastings,
East Sussex, TN34 3HH, United Kingdom; Contact person: Tracy Whitewood-Neal; TEL: (01424 433708;
E-mail: tracy. whitewood_neal@virgin. net;
veb-a site: http: // www. proteus-syndrome. org

[Talanova E.J.]

P. S. Address also in our conference "Oncologist".
Besides turn, please attention that in e-mail addresses, url veb-sites and phone numbers are not present blanks after points and hyphens (them, unfortunately, places automatically a script.

[Lyudmila]

Big to you thanks for such valuable information. I very much for a long time wished to learn or find out as much as possible about this disease.