Webinar: Ask the HHT Doctor

Ask the HHT Doctor
Presented by Dr. James Gossage
Tuesday, May 16, 7 p.m. (EST)

Join Dr. James Gossage as he answers YOUR questions about HHT treatment and management. It's a one-on-one with your doctor in the comfort of your own home. Each question was submitted by a member of the Cure HHT community to ensure topics you care about are discussed.

Submit your question for Dr. Gossage to [email protected]. Please note, questions will be chosen based on applicability to the general audience.

About The Presenter: Dr. James Gossage is Director of the Pulmonary Vascular Disease program and HHT program at Augusta University and Medical Director for Cure HHT. He received his medical degree in 1984 and did a fellowship in Pulmonary and Critical Care Medicine at Vanderbilt University from 1988-1991.

Dr. Gossage has taken care of HHT patients since 1995 and opened up his HHT Center of Excellence in 2003. In 2008 he was appointed Medical Director of the HHT Foundation, now known as Cure HHT. Dr. Gossage’s research and clinical interests include HHT, pulmonary hypertension, pulmonary embolism, and right heart catheterization.

National Volunteer Week


It's our favorite time of the year (besides HHT Awareness Month) - NATIONAL VOLUNTEER WEEK!

That's right, it's a week all about how awesome you and your support for Cure HHT is.

Check back every day for new stories about our stellar volunteers.

 

Cassi Friday

It’s a very real possibility that Cassi Friday’s husband, Anthony, and her 8-month-old daughter, Eleanor, may one day need blood transfusions to combat HHT blood loss. Both have been diagnosed with HHT type 1 and have a family history of transfusion dependency.

To encourage blood donations, which may one day treat her family and already saves the lives of HHT patients every day, Cassi held a blood drive this past March in tribute to Cure HHT.

“There have been several times when my husband has bled so much, I thought we would have to get an emergency transfusion,” Cassi said. “I am the same blood type as my husband and daughter, so I thought giving blood would be a great start.”

Cassi contacted the local Red Cross about getting involved and was invited to be part of a drive already scheduled in her area. Not only did the Friday family attend the event, but they were the faces of it, sharing their HHT story in the event press release and marketing.

“We try to donate to Cure HHT when we have money, but I feel called to be a more active volunteer,” Cassi said. “I’d like to coordinate a blood drive each year to raise HHT awareness.”

Linda DeVizia

You know when your son’s nosebleeds are caused by something more than being a “picker,” said Linda DiVizia, whose son, Jack, was diagnosed with HHT at 5 years old. Thankfully, after seeing a pediatrician and ENT who didn’t know what to do with Jack, Linda took him to a blood specialist who was able to guide her in the right direction.

“After I educated myself through Cure HHT, I had to educate all of Jack’s doctors between MRIs, CAT scans and screenings,” Linda said. “We are lucky - he can live a very normal lifestyle, and I am grateful to have the knowledge I have about this disease.”

Now that Jack is all grown up and headed to college, Linda has recommitted to the Cure HHT mission in a BIG way. In February, she hosted a fundraising Cut-A-Thon along with a pre-party fitness class in honor of her son and to celebrate her 50th birthday. In just 48 hours, she raised $13,000 to find, treat and cure HHT.

Talk about being a cut above (get it…Cut-A-Thon…cut above…).

 

Savanah Schott

Savanah Schott’s first date was not the experience she had been hoping for. Instead, at 16-years-old, she spent the day feeling nervous only to choke when he showed up – literally. Her nose started bleeding, and all of a sudden she coughed up a blood clot.

She was transported to the ER, bleeding from both her nose and mouth. The episode lasted for 45 minutes before doctors had to manually cauterize the epistaxis with silver nitrate sticks.

“Have you ever bled for 45 minutes straight, bleeding so hard it comes out both nostrils and down your throat,” Savanah asked. “Nearly filled a sink up with your own blood? It’s awful.”

Now, at 24-years-old, Savanah is a legislative force of nature on the Cure HHT advocacy team. She has attended Rare Disease Week in D.C. and met personally with a number of representatives regarding HHT awareness, including Representative Dave Loebsack, who agreed to co-sponsor the HHT DATA Act.

“If you don’t educate others and advocate for your disease, it’s just going to spiral,” Savanah said. “It’s our responsibility to increase awareness.”

Sam Guyette

Nurses are the first people you talk to when going to the doctor or emergency room, said HHT patient Samuel Guyette, making it all the more important for them to know what HHT is.

A retired member of the U.S. Navy, Sam started proctoring nurse placement tests four years ago at Lake Land College in Illinois. Before starting every exam, he takes a few minutes to educate the students about HHT.

“I have been thanked by more medical people for giving them the info than I can count,” Sam said. “One of my former students is actually a Nurse at Barnes Jewish (WUSTL), so I can safely say I have at least helped one nurse with knowledge about HHT.”

Sam has spoken about HHT to more than 500 nursing students over the years, educating them on the symptoms of HHT and sharing his personal story. The only way HHT awareness is going to grow is if HHT patients aren’t afraid to talk about it and turn experiences that may seem negative into educational opportunities, Sam said.

“I know I might bleed suddenly and I accept it. There is nothing I can do except to explain what is happening,” said Sam, who was diagnosed 37 years after spots began appearing on his lips in 1967. “Always look for an opening in discussion to explain HHT.”

Jennifer Urbanek

A year before Jennifer was set to marry her fiancé, Barry, he had a stroke during surgery to remove a brain AVM, paralyzing him on the right side. After a year of intensive therapy, and a whole lot of loving support, Barry was able to walk down the aisle and marry Jennifer.

A year and a half later, they had a beautiful baby girl named Skye who would eventually become an amazing competitive swimmer, despite being diagnosed with HHT herself.

Jennifer has remained a pillar of support for her family through their HHT experience, but also for the Cure HHT organization, dedicating huge amounts of time over the years to raise funds to find, treat and cure HHT. She has been involved with Night of Hope since it began in 2012 along with multiple legislative letter writing campaigns.

“If we have funding to do additional research, we may have a shot at doing some type of gene therapy that could find a cure,” Jennifer said. “Knowing we aren't alone in this battle has been massively comforting.”

Cure HHT was thrilled to award Jennifer the 2017 Trish Linke Award.

Qadri and Doreen Skipper

In 2013, Doreen Blair Skipper began petitioning the New York City Council to rename a street after her beloved son and HHT champion, Qadri Skipper. Her dream was realized last June when she was joined by friends and family to honor Qadri’s memory.

"This was not only a testament of his character, I wanted to express our gratitude for all who partook in his care,” Doreen said of the ceremony which renamed a portion of 110th Street in Queens.

Qadri lost his battle with HHT and Pulmonary Hypertension at the age of 17 in 2012, but not before touching the community around him with his unending optimism, enthusiasm for life and dedication to learning.

He’s also remembered by students at his high school during a yearly scholarship ceremony, where five awards are given in his memory, and by fellow patients who attribute Qadri as the reason they are still alive.

Doreen said she will continue to share “Qadri’s Way” as she moves forward, spreading awareness of HHT and PH to provide the comfort and support that Qadri gave to all he came in contact with.

“I hope when ‘Qadri's Way’ is Googled, it will shed light and awareness on PH and HHT,” Doreen said. “It's not just a nosebleed."

Submit Your Recipes for the Cure HHT Cookbook

Submissions Due by May 5th!

Everyone loves food, but finding tasty dishes that don't trigger nosebleeds can be difficult for many people with HHT. To make things even harder, everyone with HHT seems to have different bleeding triggers when it comes to what they can and can't eat.

While some people shy away from foods with blood-thinning spices and foods, other people avoid wheat products. While some people can't drink alcohol, others cut out caffeinated beverages. Enjoying a nice meal should not be this hard!

Let's make eating fun again with an HHT community cookbook!

Organized based on food sensitivity          Submitted by fellow HHT patients          Inspired by you!

How do I submit my recipes?

All you have to do is print this submission form or fill it out on your computer- we have a WORD version and PDF Version - and mail or email your recipe with pictures to Cure HHT by May 5th.

Where do I send my submission?

A full list of directions is attached to your submission form for reference. But just in case, here is where to send your tasty recipes:

Email to
[email protected]

Mail to 
Cure HHT
Attn: Lauren Linhard
PO Box 329
Monkton, MD 21111

Will the cookbook be available for purchase?

The goal is to have the Cure HHT Cookbook available through Amazon by June for HHT Awareness Month! Proceeds will go directly to our mission to find, treat and cure HHT.

Hetts Receives Young Clinician Award

 

Dr. Steven Hetts

Co-Director of University of California at San Francisco HHT Center

Associate Professor in Residence of Radiology and Biomedical Engineering

"The care I provide for patients with HHT is inspiring to me and a highlight of my career. An award associated with a true pioneer in the field of HHT is humbling and deeply meaningful to me."

Cure HHT is honored to present the Robert I White Jr. Young Clinician Award to Dr. Steve Hetts, a driven, intelligent asset to the HHT medical team. Not only was he instrumental in starting the HHT Center of Excellence at UCSF, he has continued to educate the HHT community as a whole at family conferences as well as the medical community at HHT-related seminars.

When he's not in the doctor's office, he can be found in the lab, developing novel image-guided endovascular devices and techniques for the treatment of stroke, tumors, vascular malformations  and other conditions accessible through the blood vessels or skin.

He has been the principal investigator on an NIH-sponsored project to develop remote-controlled endovascular catheters for use in interventional MRI. This could revolutionize outside stroke treatment, allowing doctors to visualize living versus dead brain tissue in real-time during their surgeries!

"He lit the spark and aided by his creativity, perseverance and serious academic interest in vascular malformations, he helped focus a large quorum of passionate individuals at UCSF who want to make HHT a disease of the past. And, he made it look easy."

- Dr. Miles Conrad, Co-Director UCSF

"Dr. Hetts brings a dedicated passion to his treatment of HHT patients and participation in the Cure HHT mission. He is always invigorating peers and mentees in various projects, championing ideas and following through. We are lucky to have him on our team!"

- Marianne Clancy, Executive Director Cure HHT