From KHQA, channel 7, Connect TriStates, by David Amelotti
The 14 conditions or diseases include anorexia nervosa, anxiety, chronic post-operative pain, diabetes, Ehlers-Danlos Syndrome, essential thrombcythemia with a JAK 2 mutation, irritable bowel syndrome, migraine, Neuro-Behcet's Autoimmune Disease, neuropathy, osteoarthritis, polycystic kidney disease, post-traumatic stress disorder, and superior canal dehiscence syndrome.
Illinois Department of Public Health Communications Manager Melaney Arnold said Governor Bruce Rauner will appoint a board of specialists to review the petitions.
The 16-member board is comprised of physicians, nurses, and patient advocates with background in specialized areas such as psychiatry, mental health, oncology.
"They are going to look at the medical conditions. They're going to look to see if there is any scientific or medical evidence that supports it," Arnold explained. "The benefits, if there are conventional therapies that can handle this type of condition. Those are all things the board will consider."
After review, the board will hold a hearing May 4 in Chicago to discuss and listen to technical evidence regarding the proposed conditions and diseases.
"They are not to have any kind of association with a dispensary or cultivation center so that way it is not someone advocating on their own behalf as far as beneficial, adding a condition for their own benefit," Arnold said.
The public is allowed to petition to add conditions or diseases to the medical cannabis pilot program act twice a year, in January and again in July
Living With PKD
From PKD Foundation of Canada
MAY
17
Time: 2:00pm - 4:00pm
Location: Classroom B (T2208), Juravinski Innovation Tower, St. Joseph’s Healthcare Hamilton, 50 Charlton Ave. East, Hamilton ON.
We hope you can join us for this informational support meeting in May!
If there has been a diagnosis of polycystic kidney disease (PKD) in your family, it may not be easy to talk about it, let alone discuss it with youngsters. This webinar features Howard Winokuer, PhD. offering information about grief and loss, as well as his advice about facilitating the healing process of children. The webinar includes Katie and Fran Towey sharing their personal experience of talking about PKD with their own kids.
From CTV, Toronto, Canada
A Sudbury, Ont., family with a sick toddler is thankful for the support they received following an online plea for help to find an apartment near the downtown Toronto hospital.
Taylum Lamoureaux, 2, needs daily treatment at the Hospital for Sick Children (Sick Kids). Taylum has a rare form of polycystic kidney disease and is awaiting a transplant. He was born with kidney failure and transported by air ambulance to Sick Kids just hours after his birth.
"We have been very moved by the love and support we have been shown by the city of Toronto and beyond," the toddler's mother told CTVNews.ca on Monday.
Only one in four babies with his condition survive, and Taylum wasn't expected to live more than a week. His kidneys were successfully removed when he was an infant, and he receives dialysis to clean his blood. He's undergone more than 1,000 hours of hemodialysis and nine surgeries.
For two years, his mother, Desiree, has stayed at Ronald McDonald House so she can be by Taylum's side during treatments. Her husband, Darren, works 12-hour shifts as an electrician in a mine in Sudbury so they can pay their bills and keep up his health insurance.
To help ease the burden of travelling back and forth, the couple was given a new 2015 Toyota Corolla and a cheque for $25,000 on CTV's Canada AM in December.
The couple was brought to tears, and said the donations meant they'd be able to spend more time together as a family.
"This will mean that Darren can spend more time here with his son," she told Canada AM. "Less FaceTime and more face-to-face time with Taylum."
Months later, the family turned to the Internet to find a new place for that face-to-face time.
The family had been paying $465 per month to rent a small apartment at Ronald McDonald House in downtown Toronto, but were told earlier this year they could no longer stay at the residence, in order to make room for new patients. [Read more]
Davenport’s nephrologist has recently informed her that, since there is no cure for this disease, her only chance of survival is with a kidney transplant. She is currently undergoing extensive medical testing and is expected to be put on the active transplant list at Virginia Mason Medical Center in the very near future. Although the transplant will be a heaven sent for Davenport, the leftover costs of co-pays, deductibles, doctor’s visits, travel fees, lodging expenses and temporary relocation fees will add up to thousands of dollars.
Along with this financial burden, the transplant is only possible once Davenport is able to meet the $5,000 deductible. Not to mention, she’ll have to spend around $8,000 a month on her post-surgery, anti-rejection medication, for the rest of her life. To help with the financial burden Davenport faces, a fundraising campaign has been established with HelpHOPELive, a non-profit organization that provides community-based fundraising for patients and their families and has been doing so for over 30 years.
Davenport is calling out to our community for help. There are a few ways that you can donate today:
Go online to http://www.helphopelive.org and in “Find a Campaign”, enter “Joanne Davenport”. Once you’ve been redirected to her campaign, you will be prompted to donate.
Send a check to HelpHOPELive in honor or Davenport at Two Radnor Corporate Center 100 Matsonford Road Suite 100, Radnor, PA 19087. Please make the check payable to HelpHOPELive and in the memo section, write “In honor of Joanne Davenport”.
All donations are tax-deductible, are held by HelpHOPELive in the Northwest Kidney Transplant Fund, and are administered by HelpHOPELive for transplant-related purposes only. To make a donation over the phone or to call for more information, dial (800) 642-8399. There will also be a raffle held at the Klickitat County Fairgrounds during the 2015 Home and Garden Show to benefit the Northwest Kidney Transplant Fund on Davenport’s behalf. Drawings for the raffle will take place from noon to 7 p.m. on May 1; from 10 a.m. to 6 p.m. on May 2; and from 10 a.m. to 3 p.m. on May 3. Prizes include gift certificates, horseback riding lessons, great prizes and more. To donate raffle items or for more information, call Janice Woolley-Coder, (360) 991-4318.
Organ Donation Awareness
Hibs are backing a national campaign which urges Scots to discuss their organ donation wishes with loved ones.
Seven players donned number 7 shirts in a bid to raise awareness of how the seven words, ‘I’d like to be an organ donor’ can save up to seven lives, and Organ Donation Scotland street teams will be at Sunday’s Edinburgh derby chatting to fans as they head to Easter Road.
Research has shown almost half of people in Scotland (45 per cent) haven’t discussed their organ donation wishes with their family and other football clubs including St Johnstone, Hamilton Accies and Rangers have got behind the number 7 drive in a bid to get more people talking.
Although many think that joining the NHS Organ Donor Register is enough, sharing organ donation wishes remains fundamental to relatives honouring a loved one’s choice in the event of their death.
It’s a subject close to the heart of Hibs fan Claudia Bell, 51, from Edinburgh, whose life has recently been transformed by organ donation. Claudia received a kidney transplant this January after living with polycystic kidney disease (PKD) for almost thirty years.
Due to her deteriorating kidney function, Claudia began dialysis in 2010 and underwent surgery to have a kidney removed in 2011 – meaning she was able to go on the transplant list later that year.
Claudia’s kidney transplant was made possible thanks to an altruistic donor coming forward, and the Hibs fanatic is now making a steady recovery.
Claudia said: “I can’t believe that a total stranger would show such generosity and offer the most amazing gift to me. The difference in how I feel after my transplant to how I felt before is remarkable. I have so much more energy and I don’t have to dialyse anymore which gives me so much more freedom.
“It’s the best gift I’ve ever received. People need to be aware of the huge difference organ donation can make to someone’s life. If your family know what your organ donation wishes are, then should they ever have to make that decision, they can maybe make a positive impact on someone else’s life. This is why it’s so important to discuss your wishes.”
Speaking about her love of Hibernian FC, Claudia said:“I’m a massive Hibs fan. When I was on dialysis, I actually changed the days I was in hospital so I’d still be able to watch their matches.
“I think getting football clubs on board with this campaign is a brilliant idea. It’s going to reach a whole new audience of people and a real cross-section of society who might not really have thought about organ donation before or have discussed it with their family. [Read more]
PKD Research
From Science 2.0, Scientific Blogging
Elevated potassium puts patients at risk of death from cardiac arrhythmias. Lacking a drug to treat the problem, doctors either stop these beneficial drugs or may use kidney dialysis to quickly lower the potassium.
It is estimated that more than 20 million people in the U.S. have chronic kidney disease in varying levels of severity. Risk increases with age, and the disease is most common in adults over 70, particularly those with diabetes. Between 5 percent and 30 percent of patients, depending on the type and stage of chronic kidney disease and whether they are treated with one or more RAASI's, may develop a high potassium condition.
Two national studies of ZS-9, a new oral drug that has been tested in more than 1,000 patients with high blood potassium, had a subgroup of patients with chronic kidney disease treated with RAASI's. Results of the ZS-9 studies were reported in recent months in the New England Journal of Medicine and the Journal of the American Medical Association.
"Dialysis is logistically difficult for patients, requires a catheter and is expensive," said Wajeh Y. Qunibi, M.D., a professor of medicine in the School of Medicine at The University of Texas Health Science Center at San Antonio, at the National Kidney Foundation Spring Clinical Meetings in Dallas. "In our studies, patients took a dose by mouth three times daily with meals, and potassium normalized in 98 percent of them within 48 hours. This is a major change in the way to treat hyperkalemia."
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