Timothy Syndrome
PodcastDX20 Elo 2019

Timothy Syndrome

In this episode we are talking about Timothy Syndrome with our guest Courtney Waller. Timothy syndrome is a rare genetic disorder that affects the heart and several other organs. Timothy syndrome is also associated with abnormalities of fingers or toes that are fused together through webbed skin between the digits (cutaneous syndactyly), specific facial features, a weakened immune system, developmental delays and episodes of low levels of sugar in the blood (hypoglycemia).

Courtney Waller is the co-Founder of Timothy Syndrome Alliance, and mom to a 5 year old daughter with the condition.

She has been a legislative advocate for the rare disease community for the past five years. Primarily working on legislation by state. She is the founder and principal of Policy Served Rare, a patient centered think tank focusing on policy that focuses on health and mental health care for the rare disease community.

Website: www.SADS.org/TSA

Twitter: @Timothy Syndrome

Facebook: Policy Served Rare @policyservedrare

Tämä jakso on lisätty Podme-palveluun avoimen RSS-syötteen kautta eikä se ole Podmen omaa tuotantoa. Siksi jakso saattaa sisältää mainontaa.

Jaksot(446)

L.A.T.E. A New Dementia (take two)

L.A.T.E. A New Dementia (take two)

This week on PodcastDX, we're talking about L.A.T.E., which stands for Limbic-predominant Age-related TDP-43 Encephalopathy. It's a type of dementia that many people have never heard of, but it's comm...

27 Loka 34min

Social Media Health Advice- How Do You Vet It?

Social Media Health Advice- How Do You Vet It?

Welcome to PodcastDx, the show that helps you make sense of your health. I'm Jean Marie McNamara.  I'm joining you today with Lita Tomas, our Production Manager and of our co-hosts, Ron Rispoli (our t...

20 Loka 18min

Fatigue in Ehlers Danlos

Fatigue in Ehlers Danlos

Fatigue is more than feeling tired—for many people living with Ehlers-Danlos syndromes (EDS), it can mean overwhelming physical and mental exhaustion that affects even the simplest daily tasks. Chroni...

13 Loka 16min

Product Recalls (AGAIN!) and Your Health

Product Recalls (AGAIN!) and Your Health

This week we will discuss product recalls and your health.  According to WEBMD: A product safety recall happens when a consumer watch group or a manufacturer finds problems with a product. Lots of ite...

15 Syys 15min

Stage 4 Cancer as an ER Doc

Stage 4 Cancer as an ER Doc

Our guest today is a physician, author and activist.  The topic this week is "Stage 4 Cancer as an ER Doc".   Dr. James Maskalyk practices emergency medicine at St. Michael's, Toronto's inner-city tr...

8 Syys 1h 3min

Ai and Robotics in Medicine

Ai and Robotics in Medicine

This week on PodcastDX, Dr. Sanjeev Kumar joins Lita, Ron, and Jean Marie to discuss AI and robotics in medicine—from surgical robots and rehabilitation technology to hospital automation, patient safe...

1 Syys 47min

EECP The Most Underutilized Therapy in Medicine

EECP The Most Underutilized Therapy in Medicine

Retired U.S. Coast Guard Master Chief Petty Officer Jack Clifford joins PodcastDX to share how severe chronic angina once limited even everyday activities and left him facing the possibility of triple...

25 Elo 44min

Diary of An Epileptic

Diary of An Epileptic

In this episode of PodcastDX, we speak with Allany Muniz, founder of Diary of an Epileptic, about the realities of living with epilepsy beyond what most people see. Allany shares how her diagnosis cha...

18 Elo 28min

Suosittua kategoriassa Terveys ja hyvinvointi

unicast
aamukahvilla
psykopodiaa-podcast
vakeva-elama-viisaampi-mieli-vahvempi-keho
meditaatiot-suomeksi
tiedenaiset-podcast
rss-pt-paahtio
katilon-kahvitunti
voi-hyvin-meditaatiot-2
rss-uplevel-by-sonja-hannus
hippokrateen-vastaanotolla
rss-hereilla
rss-adama-mindful-hetki
rss-rentoudu-podcast-rentoutumiseen-hanna-viljanmaa
rss-sanelunpurku-podcast
rss-rampaseksia
rakkaudella-karita
rss-vapaudu-voimaasi
rss-lihavuudesta-podcast
terapiassa