What to do if your personal physician doesn’t know a lot about NF?
We recently invited Dr. Jason Marker, a primary care physician, to share his thoughts on “what to do if your personal physician doesn’t know a lot about NF”.
Dr. Marker is a Family Medicine physician in private practice in Wyatt, IN. He and his wife have a high school daughter with NF-1. In his practice he takes care of patients with neurologic conditions including NF and he has lectured to medical students and Family Medicine residents-in-training about Neurofibromatosis, both in the U.S. and at symposia in Ecuador and Haiti. Dr. Marker does a lot of education to family physicians about how to deliver high-quality care to complex patients and about the importance of robust doctor-patient communication.
Dr. Marker has witnessed the frustrations of NF patients who sometimes feel that their personal physicians don’t know enough about NF. Considering his unique position in Family Medicine and having an older child with NF we welcome his perspective.
Note: Dr. Marker may be speaking at our NF Midwest Symposium and iNFo fair on November 11th so mark your calendars now to be sure that you are able to take advantage of his perspective more fully!
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Do you know of any docotor in Kansas near witchtia
Or ever in Denver
Cindy, We don’t service those areas so we’re not familiar with doctors there. We suggest that you contact NF Central Plains.
I need to find a NF1 Dr. Here in Lynden/ Bellingham Washington. Who also takes medicaid. The nearest Dr. or N.F. Clinic is in Seattle Washington and do to my disability and extreme severe pain in my abdomen I’m unable to drive any where near that distance do to my medical problems but also I have ASPERGERS Syndrome with A.D.D…. SO I’m stuck under a rock without any chances of getting or receiving any professional medical help. In which my abdomen pain got worse than ever cause I have more severe pain from gas & bloating in my abdomen but also now itself my low ext part of my back along the base spinal cord.
As of right now, I don’t think I can handle this much pain much longer, and do to this fact the gastroenterology think for sure it’s related to colon cancer but their judgement call made me not to do anything at all with gbsm..
Please anyone know of any Dr’s. Here in desegrEgation county
PLease just get a hold of me anyway you can.. Thanks Donna
Donna, We’re so sorry to hear of your difficulties. Unfortunately we don’t cover the region of Washington so we aren’t familiar with options there. Still we did a quick ask around and someone suggested a Dr. Ferreria through the Alvord Brain Tumor Institute at UW Medical Center. Even if you don’t have brain tumor they may be able to help. You also might want to reach out to Washington State Neurofibromatosis Families at http://wsnfsupport.org/.
I think you should keep going to doctors until they can help you. Extreme pain in NF needs to be seriously looked at. Please, go to our website and give us your contact information and keep us informed as to what happens. Go to http://www.nfmidwest.org/contact.
I am looking for NF Dr in my area primary Dr I live in Lindenhurst I’ll
I hate to say that i pot to help with some of the pain i get can’t take pain
Pill because it makes me feel sick so when I get home only o well life goes on
Very useful information so thank you. In my case I feel I have NO complications with my nf1 that I’ve had since the start of puberty, I’m now 46+. I’m not even sure if my new primary is experienced with the condition. I have always felt I have a mild case and I’m very lucky with my health.
I am aware that complications might occur later in my life.