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Dear <<First Name>> <<Last Name>>

Thank you to all of you who are helping raise funds and awareness of Cardiac Risk in the Young (CRY) and myheart in these unprecedented times. Please find in this newsletter information on:
  • 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

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/

Blog by myheart member, Phoebe Scoulding

My story so far – Left Ventricular Non-Compaction Cardiomyopathy

Hello. My name is Phoebe and I’m 22 years old. When I was three years old, I was admitted to Great Ormond Street Hospital to have open heart surgery to repair an Atrial Septal Defect (ASD), otherwise known as a hole in my heart. Since then I was very healthy and finished school and college without many difficulties. For this reason, I never considered myself to be somebody with a heart condition and didn’t particularly ever think much about my previous surgery, apart from for the scar down my chest which today, is barely noticeable.

.

When I turned 19, I had my final appointment to be signed off the list for cardiac patient care. However, it didn’t end up that way.

Read the full blog here: www.myheart.org.uk/my-story-so-far-left-ventricular-non-compaction-cardiomyopathy/

If you would like to share your story of getting diagnosed with a cardiac condition, please email us at myheart@c-r-y.org.uk. 

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. 

 
CredibleMeds Mobile - Apps on Google Play

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

We are sometimes contacted by myheart members who are looking for more information about insurance. Kathryn Knowles, Managing Director of Cura Financial Services, has created a short video to give some more information and guidance about looking for insurance as a young person with a cardiac condition.

Private myheart Facebook group

myheart has a Facebook group where members (aged 18 and over) can connect and share experiences with other people who have been diagnosed with a cardiac condition often ‘out of the blue’.

So many people who contact CRY/myheart want to talk to others who are in similar circumstances to themselves. The group is a private community for members of the myheart network to share their feelings and experiences with others who have suffered a cardiac arrest, inherited a cardiac condition, have a congenital condition or found out that they have a cardiac condition after a sudden cardiac death in the family and be part of a network of support for one another. A place where we hope you will feel safe in the knowledge that you are not alone in your experience.

The group is private and can only be joined by invitation from myheart. The discussions within the group can only be seen by group members. Whilst myheart has access to the group as an administrator, the group is not actively moderated by myheart. The rules for the group can be found here, and are also available in the Facebook group page.

To join the myheart network and find out more about the private area of the Facebook group please visit www.myheart.org.uk/join-myheart.

If you already a member of the myheart network and would like to join the myheart Facebook group, please email myheart@c-r-y.org.uk

You can send in a query to us at myheart@c-r-y.org.uk and we will post it on your behalf if you choose to remain anonymous.

Best wishes
myheart team
Copyright © 2018 Cardiac Risk in the Young, All rights reserved.

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Cardiac Risk in the Young
Unit 1140B The Axis Centre
Cleeve Road
Leatherhead, Surrey KT22 7RD
United Kingdom
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Cardiac Risk in the Young · Unit 1140B The Axis Centre · Cleeve Road · Leatherhead, Surrey KT22 7RD · United Kingdom