Kansas City, Kan- Key points from today’s guests:

Dr. Sean Kumer, chief medical officer, Kansas City Division, The University of Kansas Health System

• Ten years ago, in the summer of 2014, it seemed like everyone was dumping buckets of ice water on each other.
• Everyone from LeBron James to Kermit the Frog to providers, staff, and executives here at The University of Kansas Health System, including me, were taking part in the ice bucket challenge for ALS.
• It was a surprisingly effective fundraising and awareness effort for a disease where there's no cure, but there is hope.
• The University of Kansas Health System has an ALS Association-certified Treatment Center of Excellence that is helping patients.
• It's really important that we support the research. We're making progress and there is hope.

Dr. Omar Jawdat, neuromuscular medicine specialist; director, ALS Clinic at The University of Kansas Health System

• Being an ALS Association-certified Treatment Center of Excellence means a lot to the patients.
• It helps the patients significantly improve their quality of life and survival, better than all the interventions that we have.
• It means having a team of physicians and sub-specialty providers, including a physical therapist, occupational therapist, respiratory therapist, social worker, nutritionist, speech therapist.
• We are also heavily involved in research.
• We do approach the patients individually based on their preferences. We provide great help with mobility. We provide a lot of help with communication devices. Most of the patients choose to do non-invasive ventilation.
• The support of the multidisciplinary team that is provided -- the social work support and palliative care support -- is really tremendous.
• I think there is a lot of optimism in the in the field because there are a lot of new trials and new ways to address this disease.

Dr. Jeffrey Statland, neurologist; co-director, ALS Clinic, The University of Kansas Health System

• ALS is a progressive disease. The symptoms get worse over time.
• There's so much variability from one person to the next in terms of the rate of progression and survivability. About half of the of people we see will survive somewhere between two and five years. But the other half fall outside that range.
• The ALS functional rating scale was originally designed for clinical trials. It's 12 questions that reflect everyday activities in our lives, things like walking, handwriting, eating, dressing, breathing.
• The scale for each item ranges from four, which would be no difficulty, to needing a little assistance, needing a little more assistance, or being unable to do it. The total scale will range from 48 which would be normal, to zero which would be completely paralyzed. This helps us assess patients.
• Ten years ago, there was only one FDA approved option. We currently have three FDA approved treatments for ALS.
• We’re now getting more rationally designed therapies. Some of the genetic forms of the disease are giving us windows into the pathological pathways that may help more people.
• Also, we’re doing research we've never been able to do, pooling data from thousands of patients, and really trying to understand some of the environmental or other risk factors that may be playing into ALS so we can maybe mitigate those.

Kelly Marben, living with ALS

• She noticed she had issues with her right foot and realized that this was not normal and had it checked out.
• She was diagnosed with ALS about a year and a half ago and said having a good doctor and healthcare team made a big difference in how it made her feel about moving forward.
• She requires support for her legs and does use a portable wheelchair.
• The biggest challenge she is overcoming is losing some of her independence.
• She has donated samples of her voice to the University of Illinois to help with voice recognition improvements for people with ALS and speech difficulties.
• Kelly is also influential in fundraising for several different charities.

Infectious Disease Updates

Dr. Dana Hawkinson, medical director, Infection Prevention & Control, The University of Kansas Health System

• Mycoplasma pneumoniae is the name of the bacteria that does cause pneumonia.
• It can commonly cause a disease called walking pneumonia.
• There are episodic epidemics that do go through the country currently, and it seems as if we are in one of those epidemics.
• At this point in time, we know that there has been a significant uptick or increase in the number of cases, especially in the younger age groups.
• All of our Emergency Department providers are aware of this, as is all of our pediatricians and all of our other physicians.
• Also, the Kansas Department of Health and Environment did send out a health alert about this.
• Basically, we want our doctors to be on the lookout for infections, particularly respiratory infections, that may not get better with typical first-line antibiotics. Antibiotics may have to be adjusted to treat for this disease.

Thursday, Nov. 7 at 8 a.m. is the next All Things Heart. A mother suffering heart problems is told she needs a heart transplant. This mom rejects that idea and goes searching for a second opinion. Heart doctors at The University of Kansas Health System offered a far less extreme fix in a remarkable story illustrating the power of a second opinion!

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