Post by IPH NET on Jan 8, 2013 16:15:40 GMT -6
More Info from one of my IPH angels
I have redacted some info for HIPPA and privacy issues:
When I spoke with the clinic in Germany, that is currently doing clinical trials specifically for IPH, they suggested Dr. Frankel, I tried to contact him a while back, with no response, but I would assume if you call the clinic and make a new patient appointment and specifically ask for Dr. Frankel, there would be no issues. You might want to go ahead and make an appointment because you have no idea how far out they are scheduling for.
Also you may want to put on your website that patients with IPH need to look for ILD programs/clinics, versus just a Pulmonary Specialist.
Per 's information below:(Treatment for IPH can include anti-inflammatory and cytotoxic drugs and in rare instances plasmaphoresis (filtering some cells out of the blood).) I put in google "using cytotoxic drugs for idiopathic pulmonary hemosiderosis" several links come up, but I am sure you have already researched all of this, but I hope it helps a little anyways.
----- Forwarded Message ----
Subject: Re: Idiopathic pulmonary hemosiderosis
I can vouch for National Jewish We saw many patients with IPH in the clinic over the years.
I suggest she request to be seen in the ILD Clinic - this will place her in the clinic with the most expertise.
Any of the MD's in the ILD clinic would be good, but I recommend the following for her condition.
Stephen Frankel, MD
Gregory Cosgrove, MD
Kevin Brown, MD
Amy Olson, MD
I have redacted some info for HIPPA and privacy issues:
When I spoke with the clinic in Germany, that is currently doing clinical trials specifically for IPH, they suggested Dr. Frankel, I tried to contact him a while back, with no response, but I would assume if you call the clinic and make a new patient appointment and specifically ask for Dr. Frankel, there would be no issues. You might want to go ahead and make an appointment because you have no idea how far out they are scheduling for.
Also you may want to put on your website that patients with IPH need to look for ILD programs/clinics, versus just a Pulmonary Specialist.
Per 's information below:(Treatment for IPH can include anti-inflammatory and cytotoxic drugs and in rare instances plasmaphoresis (filtering some cells out of the blood).) I put in google "using cytotoxic drugs for idiopathic pulmonary hemosiderosis" several links come up, but I am sure you have already researched all of this, but I hope it helps a little anyways.
----- Forwarded Message ----
Subject: Re: Idiopathic pulmonary hemosiderosis
I can vouch for National Jewish We saw many patients with IPH in the clinic over the years.
I suggest she request to be seen in the ILD Clinic - this will place her in the clinic with the most expertise.
Any of the MD's in the ILD clinic would be good, but I recommend the following for her condition.
Stephen Frankel, MD
Gregory Cosgrove, MD
Kevin Brown, MD
Amy Olson, MD