LPHS Research Fundraiser

History

Back in the fall of 2016 our family's life changed when Chelli suddenly began a battle with a debilitating chronic pain condition called Loin Pain Hematuria Syndrome (LPHS). LPHS is best described as a pain condition that exceeds child-bearing and is like passing kidney stones 24 hours a day 7 days a week. It has no known cause and no known cure and it is difficult to diagnose and because of this difficulty many who suffer from it are accused of drug seeking.

Diagnosis

We were very fortunate to have received a quick diagnosis with the help of Dr Naomi Glick, Nephrologist in Nanaimo and once armed with a diagnosis we embarked a long journey to find help. Through this process we found Dr Prasad and his team in Regina who at the beginning of 2017 were just wrapping up a research project with great results treating other Canadians suffering from LPHS. In order to further advance the research, the next step was to undertake a double blind study to prove that the method they were using could be used as a Health Canada approved procedure - once this was accomplished other health care facilities could then benefit from the research and offer the service. Additionally, during the formal study process Dr Prasad and his team could acquire biopsies and genetic samples from the study group and work to determine what the cause and possible cure may be.

Trip 1 to Regina

November 2020, in the middle of the pandemic, we finally got the call and the next day we flew to Regina in preparation for having the medical procedure done. Once we jumped through the COVID testing hoops (this was pre-vaccine) Chelli had the procedure done in day surgery at Regina General Hospital. The profile picture for this page was taken at 6 am the day of surgery, weary and laden with pain Chelli went into the hospital with guarded high hopes that the procedure would be successful and that she would be free from the intense pain she had no escape from for the prior 4+ years. Upon waking up from after the procedure Chelli texted me this picture - 100% FREE from pain:

The procedure

For those of you who are curious about what the procedure entailed, Chelli was put under general anesthetic, and they used a laparoscopic catheter to enter an artery in the upper thigh - through this artery they were able to reach the arteries that go to the kidneys. Once in the arteries leading to the kidneys, they used RF and heat pulses to blast the arterial walls creating blockages to the nerves. By disabling the nerve pathways, the erroneous pain signals being sent by the kidneys were in essence interrupted or blocked. We knew that this blockage would not last indefinitely as the human body is amazing at self-healing - we had hoped that Chelli would have 6 months of pain relief, yet it ended up being 3-4 months. Albeit a wonderful 3-4 months and 3-4 months of no pain.

The next procedure will create further blockages and if Chelli receives similar results to one of the other research patients who had the 2nd procedure she should be pain free for years. Each time the procedure is done the nerve path blockages are further enhanced making it more difficult for the nerves to reconnect which prevents the pain signals from being sent. Our hope is that the research will result in a new discovery to determine what the cause of the intense pain is from LPHS and once identified then a cure or medicinal treatment can be developed.

So what now?

Dr Prasad and his team are near the completion of the study - I believe they ended up having 10 patients in the double-blind study portion and Chelli was part of a group of 3 that had the real procedure first as part of a test group. The Hospitals of Regina Foundation (HRF) has been instrumental in providing funding for Dr Prasad, Dr Kunal Goyal and their team to do this work. Last week they held a fundraiser in Regina called Rockin' for Research Dinner and Dance with a goal of raising $300,000 and they raised an impressive $190,000.

Closing the gap for the final $110,000 they can carry on to finish this study and work to find relief for people like Chelli and the 1,000's of others whose lives have stopped because of LPHS. The procedure to stop the pain is life changing for Chelli and for others who suffer from the debilitating pain of LPHS. But more so Dr Prasad and his team are the only ones I am aware of who are working on finding a cure. Next up is genetic testing on the samples that were collected from the study group, and this only happens with funding.

How can we help?

$110,000 is A LOT of money! So, I called the Hospitals of Regina Foundation (HRF) and talked to the CEO and President Dino Sophocleous to see if there were any options. HRF recently published their quarterly 8 page newsletter called Insights and Chelli's story was profiled on one of the pages (see story here ) so Dino was very aware of the success that Chelli experienced. We talked about the short fall of $110,000 that the research project needed, and Dino offered to provide matching funds UP TO $50,000!

So, I committed to raising the other $50,000 to help keep this work going. Our family very obviously has a HUGE vested interest in this work carrying on - however - for the past 5 years we have read and interacted with people all over the world through LPHS FaceBook groups who battle every day just to make it through each hour. So many heart-breaking stories void of hope that they are hard to read. Young people with their whole lives before them sucker punched with pain worse than giving birth every moment of their lives. So, yes, this will help Chelli, but our hopes is is that Dr Prasad's work will result in the procedure being a Health Canada approved procedure and when it is and you or your spouse or your child one day is afflicted with this nasty monster there will be help.

Let's Raise the Funds!

I've set this fundraiser up to go directly to the Hospitals of Regina Foundation - your donations will make a difference. Dr Prasad has been working to raise funds and use his own resources for the past 5+ years of this project and raising funds for projects like this are extremely difficult. They are made even more difficult when you don't know anyone personally who is afflicted with the condition. Would you consider helping? No amount is too small and all donations made through this link will be tracked. There will be some larger donations being made outside of GoFundMe - so if you'd like to be kept up to date on the full tally of donations you can follow the progress on www.LifeAfterLPHS.org - I'll work to keep it updated with info about this campaign in addition to what is tracked here.

We will raise the full $50,000 and Dino has committed to match with $50,000 from funds that Dr Prasad would not otherwise receive.

If you have made it all the way to this part, I want to thank you for taking the time to read all of this and if you have any questions feel free to contact me.

Thanks in advance for your contribution to this cause, that means so much to us and all who suffer from LPHS.