Family warns of SADS condition

A HILLMAN family grieving the sudden death of their 25-year-old son and brother are finding comfort and motivation by raising awareness of the little-known condition that took his life and helping other families in the process.

Justin O’Meara was 25 years old when he died in September from Sudden Arrhythmia Death Syndrome (SADS), a genetic heart condition that can cause sudden death in young, apparently healthy people.

The condition causes a cardiac arrest by bringing on a ventricular arrhythmia, a disturbance in the heart’s rhythm, even though the person has no structural heart disease.

Justin’s sister Katie O’Meara said her older brother, Brendan, and fiancéé, Amanda, found Justin in his bed on the morning of Father’s Day.

“Justin was a healthy and happy guy,” she said.

“He was athletic, played footy and used to be in the navy so there was no real indication that he had SADS.

“We are an extremely close family and it has been a difficult time, especially for my parents.

“Being a Defence Force family, we really just had each other to rely on and the four of us children – Brendan, Danielle, Justin and I – called ourselves the ‘awesome foursome’.

“We still are the awesome foursome, it is just that now one of us is a star.”

Ms O’Meara said her parents, Jill and Mick, drew strength from their grandchildren, her daughter, Tiarna (3), and Danielle’s daughter, Tylah (1).

“Raising awareness of SADS gives our family motivation to continue and it keeps Justin’s memory alive,” she said.

“The SADS Foundation in Australia lost support many years ago and they have been working with the US branch to try to build the awareness back up here.

“People need to know the SADS conditions can be treated and can be picked up through a simple five-minute ECG test, which is unobtrusive and painless.

“We also started a SADS Facebook page two months ago and we had more than 500 members in a week and now we are organising wristbands and pens for sale at local businesses.”

There will be a Climb to Conquer SADS event in Washington later this year. The O’Meara family has organised a climber to represent Justin and have raised $2000 for research so far. For more information, visit www.sads.org.au.

What everyone else is thinking

Sheri Russell

16/04/2012

I have a 5 year old son Darcy, who has been having unexplained fainting spells since about age 2. They are usually bought on by exercise, stress, crying, pain or heat. When he faints he takes a very long time to recover and has been getting longer over the years. He has an appointment with a pead Cardiologist this week but last Thursday after a Wasp bite he had a seizure lasting about 10 seconds with recovery time of about 30mins . The Hospital staff were very dismissive of my concerns despite his QT being at the top end of normal. They made me feel like I was over concerned ( this was before I read the report of there concerns about long QT) I know something isn't right with my son but feel like no one is listening to me. Just because no one in my family has died suddenly in the past apparently rules him out as this being a possible cause, despite my daughter and myself having regular palpitations and fainting over the years.

jill o'meara

20/06/2011

thank u all for your words if any one wants to be involved with SADS AUST or just wants contact with other families please let me know

Regards Jill

Penny

17/06/2011

We are another WA family who lost their 19 year old daughter from SADS. A healthy girl who never had symptoms of Long QT syndrome, she died in her sleep. That was her first and only symptom. Three months before her death she was tested for Long QT syndrome as its in the family. Her ECG was normal. We've since found out that about 30% of sufferers have normal readings. Please get your family tested with 12 lead ECG, stress tests and demand that a cardiologist specialising in the electrical side of the heart review the tests. We didn't and regret it every day. You may also need gene tests done. My family has three generations of LQT sufferers, two have defibrillators, all are on beta-blockers and gene testing is being done. You don't want to go through any more losses like this.

Betty Layt

19/05/2011

I hadn't heard of this until I was reading a magazine in a hairdressers. The word should be spread, and make people more aware. I notified my 21 yr old grand daughter who has had some heart problems, at least she is more aware now.
Sorry to the families that have lost a loved one, I am sure more awareness could help others.
Betty

George Burnett

09/02/2011

Hi, we are so sorry to hear of the death of your son at such a young age. Our oldest son passed away aged 27 on a soccer field in March 2010 as a result of SADS. Unfortunately there was no automatic defib available at the ground and normal CPR of course is of little value. Raising awareness of this disorder is of paramount importance especially taking into account the age range it primarily affects, many of our young people die needlessly through in action. Our thoughts and prayers are with you.

Kathryn Holden

04/09/2010

Dear O'Meara family,
I'm so sorry to hear of the loss of your son/brother Justin. Thank you for sharing the loss of Justin with SADS! Your family will be in my prayers. I have prolong QT, and treated with a ICD implant. I feel so blessed to continue to have an active life. Please have your family examined for the prolong QT condition. Again, my sincere prayers are with you.

Kathryn Holden, USA

Bill Layton

I am sorry for all your losses.
We have been living with SADS (long qt) for 16 years now. I feel like I cant do enough to help speard the word. I wish i could have met all of you and prevented you tragic events. I and my loaal group of friends will continue to bring awareness to as many as we can, I promise you that.
Bill Layton
Laytons Oktoberfest (see SADS web site)

adelaide

10/08/2010

Hi Jill, thanks for your reply. Yes, you do know who I am! I just thought I'd jump back on here to say that I'm happy to be contacted through SADS Australia (sads.org.au). Although there is no shame in my story, I do like to keep a bit of anonymity! SADS Australia understands that these issues are often very private and always very sensitive. I admire Jill and her family tremendously for being so up-front and helping to get this important message across.

26/07/2010

thanks adelaide, I know who it is and many thanks for the words to Nick, I hope he listen to your advise.I gather u didn't want your name mentioned. And to David, I'm very sorry you lost your daughter, here in Australia we have the Centenary Instuite doing research into SADS they are in NSW. At this time we are organising a fundraiser to raise money to help with their research. And to Darren, yes SADS is up and running, follow their progess on their website sads.org.au
Thank u all for your comments regards Jill O'Meara

Darren Cockroft

13/07/2010

I see that SADS Australia is up and running, WOW that is great. Perhaps we can now support this great cause in AUSTRALIA for research. Gosh only knows we need it.

20/06/2010

Nick,

PLEASE go back to the Dr and specifically ask to be tested for Long QT Syndrome. Long QT is one of the conditions that fall under SADS.

For 8 years, I was mis-diagnosed - including being told that although tests showed I did NOT have epilepsy, that I should take tegretol to stop the seizures I was having.

Although I took the tegretol, as prescribed, one morning when I was 24, I had a seizure that turned into a Cardiac Arrest. Later that day I had another cardiac arrest and was diagnosed with Long QT. It turns out that Tegretol can actually make the Long QT worse (as can many other drugs). I now have a defibrilator and pacemaker and am on a beta-blocker drug for life. I have had no seizures since.

Unfortunately, only 9 months later, we lost my beautiful 16 year old brother to the same condition so I have experienced this horrible condition from too many angles.

Please PLEASE keep bugging your Dr until you are confident they have done all the tests they can.

Nick Eastwood

16/06/2010

Just one more thing, I never faint or feel faint but the wierd heart beat was a concern for a few years before the seizures started. I feel fine now apart from the fatigue. The only reason I'm writin this is that if I have this condition is there anyway I can find out conclusively before I don't wake up in the morning. Don't want to be alarmist but also am curious as to why 5 years ago out of the blue I had 5 seizures in my sleep fir no good reason. Nick

I'm 40, five years ago I had 6 grand mal seizures in my sleep. I was a fit healthy male. At the time I was diagnosed with nocturnal epilepsy, and put on tegretol (low dose). At the time I was dubious about the diagnosis and thought there may have been a cardiac link as at times through the day usually whilst I was sitting relaxing I would feel really wierd like a stoned feeling ( only taken drugs a few times in my youth but that sudden rush is the best way I can describe it). When it used to happen it would really worry me so I started paying more attention to it. On one occassion I took my pulse whilst I was feeling the sensation, and found it to be very irregular, at one point whilst I was taking it there was a gap of about 5 seconds where there was no pulse at all. I really paniced and jumped up out of my chair then my pulse started again. Ive been seizure free for the last 3 years but do on some days feel very tired, often wonder if my sleep is issue? Any thoughts? Nick

David McLachlan

Hi , we lost our daughter Jane on 20th Nov 09 . She was 19 yo and had suffered from epilepsy for 8 yrs . Our doctor called it SUDEP . I have been in touch with a Dr Alica Goldman in Houston Texas who is doing research into the causes
regrds David