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joyceg98's discussions
ELST in Chicago
- By joyceg98 · Posted August 10, 2009
- In VHL Family Alliance · 7 replies
- We have a member who has just relocated to Chicago, and who is having trouble with what sounds like an endolymphatic sac tumor (in the inner ear). Can you suggest a specialist in the Chicago area who ...
Care Plans in the UK
- By joyceg98 · Posted June 29, 2009
- In VHL Family Alliance · 6 replies
- I understand that the UK National Health System has set a goal that everyone with a long-term condition be offered a Care Plan by June of 2010. Has anyone approached you about this? Have you requested ...
Frustration and false starts
- By joyceg98 · Posted June 21, 2009
- In VHL Family Alliance · 11 replies
- We are looking for frustrating stories about a delayed diagnosis of VHL, to help young doctors learn. Were you told it was something else, only to lose valuable time in identifying the real problem? I ...
Open line tonight!
- By joyceg98 · Posted February 11, 2009
- In VHL Family Alliance · 2 replies
- We're on the phone right now -- join us at 408-792-6300, meeting ID 686-342-664, attendee ID 3# Best, Joyce Graff and Fran Mott ...
Booklet on Family History
- By joyceg98 · Posted January 28, 2009
- In VHL Family Alliance · 1 reply
- One essential tool in getting a diagnosis is to understand the risk factors that run in your own family. VHL, of course, is one such issue. But nonetheless, EVERYONE carries between 5 and 10 potentially ...
Global Healthcare / Medical Tourism
- By joyceg98 · Posted August 26, 2008
- In VHL Family Alliance · 0 replies
- Have you ever gone outside your home country for medical treatment? There is a radio show at PowerfulPatient.org that will begin on September 9 on this topic. I am interested in your own experiences with ...
Webinars coming! -- what topics do you want to see?
- By joyceg98 · Posted August 22, 2008
- In VHL Family Alliance · 3 replies
- What's a Webinar? -- A seminar on the web! On September 24 we plan to kick off a series of Webinars on topics of interest to this community. September 24, 8 pm Eastern / 5 Pacific Joyce Graff, on "VHL ...
Genetic myths
- By joyceg98 · Posted August 15, 2008
- In VHL Family Alliance · 18 replies
- I'm curious -- what family lore was in your family about how VHL was inherited, or where it began? - only affects boys - only affects girls depending on who had VHL in the family. But other things, too ...
Peter Saltonstall on Internet Radio!
- By joyceg98 · Posted August 12, 2008
- In NORD Rare Disease · 0 replies
- Joyce Graff of the Powerful Patient, a radio show on webtalkradio.net, recently interviewed Peter Saltonstall, the new President of NORD. We talked about Peter's work on patient safety in hospitals, and ...
Gentamycin for ELST?
- By joyceg98 · Posted August 6, 2008
- In VHL Family Alliance · 0 replies
- Has anyone had gentamycin treatments for an ELST? If you would be willing to speak with this member, please send me an e-mail to director@vhl.org. Thank you! Tom's query: Now 18 months post surgery for ...
Mouth sores? tongue?
- By joyceg98 · Posted August 6, 2008
- In VHL Family Alliance · 1 reply
- I don't think this is directly related to VHL, but may be a side-effect of some treatment and/or nutritional deficiency, but please help if you can. We have a member who has developed mouth sores following ...
Eye prosthetics - coral implant?
- By joyceg98 · Posted August 6, 2008
- In VHL Family Alliance · 5 replies
- Has anyone had a "coral implant" after having an eye removed? There is a woman in Canada who is having difficulty with hers, and I wondered who else might have had experience with them. Thank you, Joyce ...
On-the-go recipes and hints
- By joyceg98 · Posted July 27, 2008
- In VHL Family Alliance · 7 replies
- It's one thing to shop for good, fresh foods and cook a healthy dinner at home. It's another thing to eat right when we're on the go -- like at the hospital! How many of us have stood in front of a workplace ...
Latest VHL radio show
- By joyceg98 · Posted June 3, 2008
- In VHL Family Alliance · 21 replies
- This week's radio show is about Appreciating Kidneys. In it we talk about how to take care of your kidneys, and what to do if they no longer work. I talk about my son's experience on dialysis, and about ...
New Medicare policy - what do you think?
- By joyceg98 · Posted May 8, 2008
- In VHL Family Alliance · 0 replies
- A colleague of mine posted this in the Patient Advocacy discussion this morning... what do you think? -- Joyce I attended a program on medicare reimbursement. This doesn't affect my practice directly ...
Opportunity in Chicago Sat May 31 - info about clinical trials process
- By joyceg98 · Posted May 6, 2008
- In VHL Family Alliance · 0 replies
- On Saturday morning, May 31, Nancy Roach and Mike Katz are helping to convene a couple of focus groups of patient advocates at the 2008 American Society of Clinical Oncology (ASCO) meeting in Chicago ...
Support community at Inspire / ClinicaHealth
- By joyceg98 · Posted April 29, 2008
- In VHL Family Alliance · 1 reply
- We have heard from a number of people about things in this new version of Inspire that are either confusing, or not what you would have wished for. Everyone at VHLFA and Inspire want you to be happy and ...
GINA passed the Senate! Please thank your members of Congress
- By joyceg98 · Posted April 28, 2008
- In VHL Family Alliance · 0 replies
- The Genetic Information Non-Discrimination Act passed through the Senate last week. It was passed early in this Congressional session by the House, and the President has promised to sign it into law ...
How the brain works
- By joyceg98 · Posted April 11, 2008
- In VHL Family Alliance · 0 replies
- This is an interesting web cast on many levels. It is worth taking a couple of minutes to watch it. Neuroanatomist Jill Bolte Taylor had an opportunity few brain scientists would wish for: One morning ...
Genetic Discrimiation?
- By joyceg98 · Posted March 5, 2008
- In VHL Family Alliance · 0 replies
- Are you experiencing what you believe to be discrimination based on your genetic condition? Good Morning America wants to showcase the problem of genetic discrimination. They need an active case, and ...