• Online myheart meeting with Consultant Cardiologist, Dr Sabiha Gati
• CRY Raising Awareness Week and Great Cake Bake 2020
• Blog by myheart member, Phoebe Scoulding
• Update from CredibleMeds for LQT patients
• Information on insurance for a young person with a cardiac condition by Kathryn Knowles
• Private myheart Facebook group
• GDPR

Online myheart meeting with CRY's Consultant Cardiologist Dr Sabiha Gati

A myheart members’ video meeting is planned between on Saturday 17th October 1-3pm 2020. Members registered to attend can start logging in from 12:45pm. 

Meetings are free to attend and give members an opportunity to meet and discuss their experiences in an informal but supportive environment. Those young people that attend these meetings usually find them very helpful.  It does not matter how long ago you were diagnosed or whether you are undergoing any sort of treatment at the moment.

There will be a Q and A session with CRY's Consultant Cardiologist, Dr Sabiha Gati. In this session, you are free to ask any questions you may have about your condition, the exercise/s you can do or any other cardiac concerns you may have especially with regards to current circumstances.

If you have questions about your condition or would like to virtually meet other young people, aged 18 to 35, coping with the diagnosis of a heart condition register for this video myheart meeting. The meeting is for myheart members who have suffered a cardiac arrest, have an ICD or are being considered for an ICD or have been diagnosed with an inherited cardiac disease.

Register for the meeting here: www.myheart.org.uk/online-myheart-meeting-with-dr-sabiha-gati-17-10-2020/

CRY Great Cake Bake 2020

Raising awareness of CRY and its objectives can be as easy as a click of a button, printing or ordering posters to display, liking or sharing a post on our CRY and myheart social media pages and sharing Youtube videos CRY and myheart have produced all help to raise awareness and save young lives.

Through raising awareness of these conditions, the public, medical and sporting communities will be alerted to the symptoms that can lead to a young sudden cardiac death, as well as the potential risks that these conditions carry for an asymptomatic population.

We are excited to announce the CRY Great Cake Bake will take place on 20th November 2020, so save the date, get your creative thinking caps on, and get ready for another fantastic year of raising awareness through baking.

You can expect once again, our fabulous recipe booklet, games ideas and competitions, with more to be announced as we get closer to the date.

If you would like to be the first to hear about updates and  how to get involved, please visit: www.c-r-y.org.uk/raising-awareness-week-the-cry-great-cake-bake-2020/

Update from CredibleMeds for LQT patients

Members with cardiac conditions may like to consider registering with CredibleMeds to be kept up to date with any changes to the QT drugs to avoid list https://crediblemeds.org/everyone/.

We have recently received the following message through CredibleMeds:

September 10, 2020

Addition of six drugs to the QTdrugs categories
We are writing to inform you that the following four drugs have been added to the category of drugs with a Possible Risk of Torsades de Pointes (TdP):

• Levetiracetam, a drug for the treatment of epilepsy
• Ozanimod, a drug used to treat multiple sclerosis
• Remimazolam, a sedative
• Oliceridine, an opioid used to treat pain

Also, another drug used to treat parasitic infections, Meglumine antimoniate, has been added to the Known Risk of TdP category, and the decongestant, Levmetamphetamine, has been added to the list of Drugs to be Avoided by patients with congenital long QT. 

 

Information on Insurance for a young person with a cardiac condition by Kathryn Knowles

Private myheart Facebook group