disability benefit long qt syndrome

carolineb69

Hi
long qt syndrome

sarlyka

Hi,
I don't know anything about long qt syndrome but I do know that there is an art to filling in the DLA forms. Is there a dedicated website for this condition? Or support group? They might be able to offer some advice.
If you look on the NAS website nas.org.uk
they offer advice for parents completing forms for kids with autism. Some of this might help you: constant supervision etc.

Hope that helps a little.

krisskross

Our daughter was diagnosed with Wolffe Parkinson White Syndrome. This caused her to have episodes of frighteningly fast heartbeat, chest pain and shortness of breath. However they were 'episodes' rather than permanent and like your son she tried to avoid stressful situations or major physical exertion.

Quite frankly extra money would have made no difference at all. Her cardiology care and drugs were free and that was all that she needed apart from carrying a card saying what was wrong with her in case she lost consciousness when out alone. Our job as her parents was to encourage her to live within her physical limitations rather than encourage her to consider herself 'disabled'. This worked fine and eventually she had surgery and was able to come off the tablets. She didn't need any more supervision or care than any other young person her age. She was at greater risk of SADS (sudden adult death) but there was nothing more that could have been done to prevent it. She did have 2 pregnancies before her surgery and all went well.

I hope there is a similar happy ending for your son.

NoMoreLongQT

Yes, I've been researching the subject of Long QT Syndrome for over 12 years. It is a totally treatable condition, no one should really be disabled from it. The only thing they usually won't allow you to do is "competitive" type of sports. Of course always go with the explicit instructions of your Cardiologist or Electrophysiologist (EP) or Pediatric one if it is for the care of a child.

Here are some great web sites. You can contact SADS. They will be more than happy to answer your questions, as would I, if there is a way for you to get in touch with me by contacting this blogs administrators. They have permission to give you my E-mail address. I lost a 22 year old daughter, to undiagnosed Long QT Syndrome.

Yes doctors are pretty woefully lacking in LQTS information, esp. since it's the 2nd leading cause of sudden cardiac arrest in young people.

Here are many very helpful sites. I would love to have you E-mail me, but don't want to give out my contact information on a public forum.

Just Google or Bing Long QT Syndrome and you can find out tons of information. They won't let me post on this site, but there is a group in the U.S. called SADS. They would be more than happy to help you. You can easily get their address. It is a site of all kinds of information that can affect the electrical conduction system of the heart. It stands for Sudden Arrhythmia Death Syndrome.

I belong to Parent Heart Watch. No one should do this journey alone. You can contact them and tell them to forward your E-mail to the "Long QT Lady".

I would be more than happy to help you, and also have a medical background, as I was educated as an RN, and have kept up pretty well, even though I haven't worked as a nurse for many years. I think I know more about LQTS than many of the doctors I've come in contact with.

carolineb69

Hi
nomorelongqt i have sent you a private message on here with my email address
Caroline