Doctors in Burton, MI

Hi Emme- Please contact me at the Network office so we can make sure that you are receiving updated newsletters, articles and information on meetings etc. You can contact us at 440-834-0011 or via email at info@bccns.org. Dr. Ervin Epstein at Children's Hospital Oakland Research Institute (510) 450-5688 of Dr. Jean Tang at Stanford University (650) 721-7152 are both very knowledgeable about the syndrome. Sheila, BCCNS Life Support Network

Dr. Dennis Song in San Francisco. He performed my oral surgeries and is extremely informed on the diagnosis of BCCNS.

Dr swamy. She is in grand blanc at holly and cook! She is great! 248-695-2500. She can help u!

Patty, our family goes to Dr. Sayal, he's on Atherton. We have about 10 family members that go to him. He's done a good job for us over the last 15 years and he's pretty prompt most of the time.:) Hope that helps.

Dr. April Tyler in Fenton off Fenton Rd.

Dr Dasher on Hill Rd she is wonderful:)

Try Complete Care Center on Holly Road. There is Dr. Tindle and 2 Nurse Practitioner, one that specializes in women. 8106958011. I like it there.

We go the Dr Sharma ENT for jaw systs. He is in Salt Lake City. We go to Huntsman Cancer Institute-Dr Bowman for skin cancer removals. Love them both. They are knowledgeable about BCCNS and very nice. My kids have not had any jaw systs. My hubby and two kids, ages 12 and 5 have BCCNS. My hubby has had over 10,000 skin cancer spots and only one jaw syst. It affects us all differently.:). Wishing you the best! We live near those Doctors so if you need a place to stay or want to talk, you can call me. 801-919-6739.

Hi Brittany! The derms name is Glen Bowen and the ENT is Pramod Sharma. As my wife said they are both knowledgeable about BCCNS. Let us know if you need anything else.:)

Our list is comprehensive, includes support, financial, advocates, education, extra curricular, testing, therapists, doctors, dentists, OT, PT, Speech, residential and transitional. 4 pages long! Genesee County has a lot of resources when you see this list!

The resources page on our website is now better than ever! Check it out: http://www.geneseeautism.org/#!resources

I was at work when you posted. Welcome to the group and we are all here to help and be sure that you are NOT ALONE. You need to contact Kristi Burr from my friends list for a referral to the best one in the Boston area but please be aware that BCCNS is so rare that it is not uncommon for a Dr to have one BCCNS per career. If you have not already please go to BCCNS.org and read the massive database there. Please friend me on Facebook and then text me or Facebook messenger me at anytime 24/7/365 as I am 60 and was first diagnosed as BCCNS was first being defined by Dr Gorlin. I'm convinced I am still here to be of help with my 51 plus years of experience. BCCNS is in 3 consecutive generations of my family but we are proof that it IS survivable. Again welcome and remember that you are not alone.

I live in Boston and see Dr Nicole Leboeuf. She's been seeing me at Brigham Dermatology in Longwood for several years now. She's very sweet and is familiar with BCCNS. I see her about 2-3 times/year to keep my basal cells at bay.

Hi! I'm from East Boston. Most of my specialists who are familiar with the syndrome are Pediatrics only, however if you are ever looking for an Oral Maxillofacial Surgeon, I suggest Dr. Zachary Peacock at Massachusetts General Hospital. He's seen multiple patients with the syndrome and is very experienced.

Welcome Adriana to our wonderful, informative, support group. Mark shared great information about Kristi Burr at BCCNS and Gary Lombardo is a wonderful resource. I live south of Boston and did a lot of research to find the right team of doctors . I "self diagnosed" Gorlin syndrome at the age of 60, I am now 63! My dermatologist is in Quincy and the moh's and oral surgeons are also at MGH. Dermatologists, Moh's & oral surgeons are all aware of BCCNS. Every patient is different. You have to be your own health care advocate to inform your doctor with your family history. This Facebook group along with the skin cancer and Gorlin groups all share their own personal experiences . Good luck and Happy Thanksgiving. I am so thankful for all of the above groups.

If he is age 25 or younger, try Dr. Marc Alexander at Boston Childrens Hospital. He did the surgery for my left fibroma that was related to Gorlins when I was just 4 years old. Now, I am turning 13 in September, and I have ABSOLUTELY no cardiac problems. Now I can do ANYTHING that I want to do, without any worries, except if they are very rare. You may not live near here, but the traveling is totally worth it!

THank you so much for sharing Kaylene! That is a big encouragment to other children and their families I'm from RI but I agree Boston Childrens is awesome and well worth it. I know a great MOHS surgeon also if you need one. He used to be head of Dermatology Surgery at Dana Farber He is so awesome1

Maybe try a geneticist Lawrence Meyer at the Univ of Utah/Primary Children's Med Ctr is good He was working in research about genetics of melanoma so he did a fellowship in derm He was our derm when we were going to the U of U derm clinic

When my daughter was 12 and in Primary Med Ctr for her 4,5 lb ovarian fibroma he saw her name on the board Came and visited with us then talked to the pathologist and has cellular level tests done that told him and us more about her fibroma Years later he actually published an article about " 12 Year Old Girl With BCCNS and asymptomatic ovarian fibroma "

Thank you Sara Ann and Jane. I will look into your ideas. I passed along a couple of names of geneticists that Kristi at Life Support Network shared with me, and

I don't know if this will help but it is certainly worth a try! Dr. Ronald Lacro from Boston Children's Hospital is a cardiologist and I think a geneticist. He is Director of the New England Marfan Association. Marfan's is another rare and often genetic disorder. It usually affects the heart as well as other organs. He is very very smart, sensitive and kind. If he doesn't know, he may be able to refer you to someone who can help. Try to contact him.

I live in MD as well and go to Sammy Kang, but he needs referral from your primary doc. Monica, if you could let me know yours as well, that would be awesome. Dr Kang has one other BCCNS patient he says.

I was at MUSC back in the 80-90's, Dr Han was my oral surgeon at that time and everyone did a phenomenal job! My okc's were pretty aggressive- eroded the maxillary sinus, orbital floor and part of the zygoma. In addition to that they found more as well which they handled with ease. I was around 12 at the time. We are thinking about you and you are in great hands!!!:) Also Dr. Pearson G Lang, dermatologist, would be a great resource if he's not retired. When I was diagnosed at 6 months old in 79, my parents were given two options, Dr. Lang or St Judes Children's Hospital....

Pepcid OTC and vinegar drink up!

Mary Maloney Umass Worcester is very familiar w/our syndrome and has many patients with it.i switched to her fro Dana farber many years ago but haven't researched docs in Boston since .