The University of Kansas Health System is treating a total of 7 COVID patients today.
Key points from today’s guests:
Aubree Bell, Familial hypercholesterolemia
- 10 years old, diagnosed at two and a half years.
- Therapy was every 14 days, parents drive from South Dakota, 8.5 hours each way. Now once a month.
- “They are so nice they spoil me. Halloween, my birthday, Christmas, Thanksgiving.”
- “I want to move to New York and be a fashion designer.”
Jade Bell, mother of Aubree
- “It was frustrating that I was being blamed.”
- Daughter was getting orange bumps on her skin.
- She was being accused of not bathing her child properly.
- Sought second opinion, Aubree was diagnosed. Jade kept searching for treatment and found Dr. Moriarty.
- “I always say go with your gut feeling. As a mom you know when something is wrong and unfortunately sometimes, we have to be our own advocate and push for the answers that we need.”
- “There’s a good chance I wouldn’t have a daughter anymore if we weren’t getting this treatment.”
Dr. Patrick Moriarty, Dir. Clinical Pharmacology and the Atherosclerosis and Lipid-Apheresis Center, The University of Kansas Health System
- “This therapy of apheresis is very rare in the United States for treating this kind of disease.”
- Lipoprotein apheresis filters out bad cholesterol and puts clean blood back in body.
- “Now we have the largest center in North America. We treat more patients here at KU than all of Boston, New York, Chicago, L.A. combined.”
- 80 patients currently receiving therapy.
- There are new medications, it has lowered Aubree’s bad cholesterol from 900 to 450. Now, Aubree only makes trip once a month.
- Take out proteins and no volume so we lower the patients’ blood viscosity by 20-30%.
- “They are actually feeling better by this therapy.”
- “She’s like family now because everyone knows her up there and she’s become quite the celebrity in our clinic.”
- Cholesterol is a major protein our body needs. There are good and bad.
- Another genetic cholesterol is LPa, that is found in 1/5. Predominately in African Americans. 30% of African Americans have this. A blood test can detect and diagnose.
- If you have doubts about what your doctor is telling you, GET A SECOND OPINION.
Dr. Geetha Raghuveer, Pediatric Cardiologist, Children’s Mercy Kansas City
- Familial hypercholesterolemia. Very common in children 1/250. Often undiagnosed or misdiagnosed.
- Aubree very serious case, gene from both mother and father. If untreated she could have had a heart attack by 15-20 years old.
- Often parents seek advice from dermatologist due to the bumps on skin.
- Has seen 3 patients who have a case as serious as Aubree.
- This is genetic, not lifestyle.
- Universal lipids screening, offered between 9-11 years old at pediatrician office.
- All children should have this screening done. Ask your doctor if they have screened.
- Parents need to have cholesterol screened.
- Children with Medications are being used to lower cholesterol in children aged 8 and up. Very safe.
Dr. Dana Hawkinson, medical director, infection prevention & control, The University of Kansas Health System
- EG.5 new Omicron variant.
- Same symptoms
- Same preventative measures: Boosters, Masks.
- Anti-viral medications for treatment.
- Fever free for 24/48 hours swap toothbrush etc. Still need to isolate for 5 days.
Wednesday, Aug. 16 at 8 a.m. is the next Open Mics With Dr. Stites.
Older adults need 3 vaccines this fall, Flu, COVID and the first ever shot for RSV. We walk you through the complicated vaccine schedule with world-renowned vaccine expert Dr. Gregory Poland.
ATTENTION MEDIA: Please note access is with Microsoft Teams:
Join on your computer or mobile app
Click here to join the meeting
Meeting ID: 235 659 792 451
Passcode: 6CSfGE
Download Teams | Join on the web
Or call in (audio only)
+1 913-318-8863,566341546# United States, Kansas City
TVU Grid link: UoK_Health_SDI
Restream links: Facebook.com/kuhospital
YouTube.com/kuhospital
Send advance questions to medicalnewsnetwork@kumc.edu.