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VHL Alliance

Von Hippel-Lindau (VHL) support group and discussion community

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VHL Alliance

Art and illness

Cancer-Inspire's journal

Cancer-Inspire

art-and-illness

200150

By Radha_Inspire Digital Editor, Inspire After being approached last year to contribute a drawing to a how-to art book, Inspire member Shoshi (Shoshiplatypus) was thrilled and, despite being mid-chemotherapy for colorectal cancer, decided she couldn’t say no. But the commissioned piece was meant to describe her still-ongoing cancer journey. Although Shoshi, who also has myalgic encephalomyelitis ... Read More

VHL Alliance

Whippel Surgery

In: Finding emotional support

Louise45

whippel-surgery

200150

Hi it's me Louise It's been a long time since i came on but am still not feeling good just finish my needles blood thinners. That make me happy but am still losing waite i was 186 pounds and now am down to 142 pounds and am still losing . Ma stomach is still in pain . I had my whippel surgery on September 23,2016 and they told me 3 months i should be doing the same as before but am ... Read More

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VHL Alliance

What not to say to a cancer patient

Cancer-Inspire's journal

Cancer-Inspire

what-not-to-say-to-a-cancer-patient

200150

  • 361 Replies )
  • Processing ...

By Radha_Inspire Digital Editor, Inspire A Personal Health column at the New York Times today discussed what to say and, crucially, what not to say, to cancer patients based on a book called Loving, Supporting and Caring for the Cancer Patient by Dr. Stan Goldberg, a prostate cancer patient and communications specialist at San Francisco State University. Any type of discussion about ... Read More

VHL Alliance

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200150

  • 494 Replies )
  • Processing ...

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

VHL Alliance

Hello, everyone!

Radha_Inspire's journal

Radha_Inspire

hello-everyone-97

200150

Hello everyone! My name is Radha and I am the digital editor at Inspire. We’d like to share some news about an editorial initiative that we hope will be of use to you. Your community is a space where you can express your thoughts, seek support, and share information with fellow members, and will, of course, continue to be. My goal is to take cues from your discussions, your questions ... Read More

VHL Alliance

What’s the story of your rare disease diagnosis?

Brian's journal

Brian

whats-the-story-of-your-rare-disease-diagnosis-1

200150

Dear members, Today, more than 200,000 Inspire members have a rare condition. You have made Inspire a place to share your experiences with others who understand what you’re going through and help others at the same time. Many of you have described how long it took for you to receive an accurate diagnosis for your rare condition, while some of you found your diagnosis quickly. If you’d ... Read More

VHL Alliance

Inspire members share ways to respond to awkward cancer questions

Cancer-Inspire's journal

Cancer-Inspire

inspire-members-share-how-to-respond-to-awkward-cancer-questions

200150

By Radha_Inspire Digital Editor, Inspire There are infinite ways someone can say the wrong thing when they are talking to you about cancer. What feels “wrong” can also change. Something that sounds encouraging one day – “You’re going to beat cancer!” – sounds absurd the next day. In the moment, it’s difficult to know how to respond to insulting or ignorant comments, especially if they've ... Read More

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VHL Alliance

What’s in a number? The million member milestone

Brian's journal

Brian

whats-in-a-number-the-million-member-milestone

200150

Dear members, Last night, Inspire hit a milestone -- one million members. One thing that is clearer than ever is that the value of this community is created by you, every minute of every day. I often think that our job is to provide you a safe, supportive space, and then get out of your way. The words you write and the friendships you forge are things we could never create on our own ... Read More

VHL Alliance

First Cancer Moonshot recommendation is more patient data

Cancer-Inspire's journal

Cancer-Inspire

first-cancer-moonshot-recommendation-is-more-patient-data

200150

  • 193 Replies )
  • Processing ...

By Radha_Inspire Digital Editor, Inspire The latest Cancer Moonshot report from a panel of top-tier cancer experts lays out 10 recommendations to speed progress in fighting cancer. The first recommendation is to ask patient to help create a large database of tumor profiles. This information will also pre-register these patients for relevant clinical trials down the line. “Many patients ... Read More

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