by kymera_editor | Jun 18, 2019 | Advocacy, ICD, LCSD, Long QT Syndrome, Managing Multiple Diagnoses, Online Patient Communities, SADS Spotlight
Name: Alexis Holmgren Age: 18 Which SADS condition do you have? Long QT Syndrome Type 5 When were you diagnosed? In 2013 at age 12 How are you treated? Beta blocker (Nadolol), Spironolactone, Left Cardiac Sympathetic Denervation (LCSD), and a dual chamber ICD with...
by kymera_editor | Mar 1, 2019 | Advocacy, AEDs
Do you notice AEDs in your community? If you’re at work, out shopping, working out or participating in your everyday activities – could you find the AED immediately if someone were to need it? I’m the mom of two girls with Long QT and I wasn’t in the habit of...
by kymera_editor | Feb 28, 2019 | Advocacy, Rare Disease, Timothy Syndrome
February 28th is Rare Disease Day. The main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. While all SADS conditions are considered rare diseases, we want to focus on...
by kymera_editor | Nov 8, 2018 | Advocacy, Grief and Loss, Sudden Cardiac Arrest
When you’re six years old, the world is your oyster and your imagination is taller than you are. Nothing bad could ever happen because the toxic realities of life far surpasses our level of comprehension at such a young age. I always found comfort in the...
by kymera_editor | Apr 13, 2018 | Advocacy, Fundraising, Long QT Syndrome, Parenting, Timothy Syndrome
Fundraisers don’t have to be big or expensive to make a difference—they can be as simple as having people over for milk and cookies. That’s something Mary Ann Ciciarelli knows to be true. For the past seven years, her family has hosted a milk-and-cookies fundraiser in...
by kymera_editor | Feb 14, 2018 | Advocacy, HCM, Long QT Syndrome, Parenting, Sudden Cardiac Arrest
My heart breaks every time that I hear of a child dying suddenly from an undetected heart condition. How does one recover from knowing that if a diagnosis was made, their child may be with them today? I don’t have that answer, but unbelievably found myself...
