I would like to bring people’s attention to this rare and heartbreaking condition.
Firstly, What is Dravet Syndrome?
Dravet syndrome is a very rare form of epilepsy. It appears in the first year of someone’s life and it affects 1 in every 15,700 people. Dravet syndrome sits at the severe end of the spectrum of SCN1A related disorders. If you would like to know more about the SCN1A Gene you can find more information here. As Dravet Syndrome has very limited treatment options, it means that this condition is extremely difficult for both the patients and families to live with. People living with Dravet syndrome will, unfortunately, suffer from frequent and prolonged seizures. As a result of this, it means that patients will have to face a 15-20% mortality rate. 
Children usually have a very normal development up until their first seizure. As they get older most children living with Dravet Syndrome will have development issues. This usually happens around 2 years of age. It is worth noting that some children around the age of 6 may start to improve with cognitive issues. However, most children will have some kind of persisting disability that affects their development.
This is a list put together by the Dravet Syndrome Foundation about common issues around the condition. 
- Prolonged Seizures.
- Frequent seizures.
- Behavioural and developmental delays.
- Movement and balance issues.
- Delayed language and speech issues.
- Growth and nutrition issues.
- Sleeping difficulties.
- Chronic infections.
For a complete list of common issues visit the Dravet Syndrome Foundation
What Causes Dravet Syndrome?
The condition is caused when the SCN1A gene isn’t functioning properly. This is because it causes the sodium channels which help the brain function to not work properly. Also, It has been noted that the first seizure can occur around the time of the child first immunisation. However, this has shown to not be the cause of Dravet Syndrome, and those children should still receive their immunisations. Also, The fact that medical professionals know what causes this condition does make it hopeful for one day finding a cure. 
How is Dravet Syndrome treated?
Dravet Syndrome is usually treated by finding the best seizure control possible. This is done by finding the best combination of seizure medication so medical professionals can find the best way to treat seizures and also, prevent seizure emergencies. Consequently, this is believed in helping lower the mortality rate.
According to The Epilepsy Foundation, some seizure medications should be avoided. These medications that should be avoided are known as sodium channel blockers. These should be avoided because they can worsen seizures in Dravet Syndrome. Here is a list of these medications:
- Phenytoin (Dilantin).
- Fosphenytoin (Cerebyx, Prodilantin).
- Carbamazepine (Tegretol).
- Oxcarbazepine (Trileptal).
- Lamotrigine (Lamictal).
- Rufinamide (Banzel).
Early diagnosis is key for a more successful treatment. Also, developmental assessments should begin as early as possible. An enriched environment is great for helping patients as well. They should also receive the following types of therapy.
Unfortunately, medications used at the moment aren’t able to obtain complete seizure control. The hope is that with further research, treatment will improve and the possibility of a cure could be within reach. That possibility is what most people, whether they have Dravet Syndrome or know some who does, would wish for.
How can you help?
There are many ways you could help with Dravet Syndrome. One of the best things you can do is to make people aware of this condition. Unfortunately, as it is so rare there are many people out there who haven’t even heard of it. So after reading this, tell people about Dravet Syndrome. Tell them about this horrible c
ondition that is affecting people’s lives. The more people that know, the more they can help as well. There are other great ways you can help, which I will list below.
Make a Donation
So many great foundations out there are trying to help with Dravet Syndrome. You can help massively with research and treatments by donating some money to these organisations. Here are 3 great foundations and their goals for you to consider.
- The Epilepsy Foundation – A national non-profit with nearly 50 local organisations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The Foundation works to prevent, control, and cure epilepsy through community services; public education; federal and local advocacy; and supporting research into new treatments and therapies. Also, the Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential.
- Dravet Syndrome Foundation – The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions, and to provide support to affected individuals and families.
- Dravet Syndrome UK – Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research. The charity was founded in October 2008 and registered with the Charity Commission of England and Wales in January 2009. In Addition, it was founded by parents looking for support and information about treatments and research. All of which was sadly lacking in the UK at that time. Since the charity was founded the membership has risen from just thirty families to almost four hundred.
We can get involved in helping the charities in so many great ways. You could host an activity to raise awareness and donations. You could get people to sponsor you for a run. The possibilities are endless yet the need is crucial. Also, the charities I listed above have other great ways you start helping. So check them out and try and come up with something to help.
The information I have listed about Dravet Syndrome is very small in comparison to what you can find out. It only takes a very small amount of research to find some great content on this subject. So If, like me, you what to learn more about the condition, the information is there.
One of the best things you can do is help each other which is especially relevant in the world of social media. With Facebook at almost everyone’s fingertips, finding groups and support for these kinds of things is easier than ever. So if you have a child with Dravet Syndrome and want some advice, or maybe you have some advice to give to others in your position. As a result, you might find it is a great way of coping. With such a rare condition it is important to make sure that you know you’re not alone.
In Conclusion, this condition needs support. We all need to help in whatever way we can. Hence why I’m writing this. I want awareness and treatment for Dravet Syndrome. Also, families of those suffering from this have earned their right for extra help. Furthermore, no one is asking you to donate your life savings. Even a few pounds or dollars is a big help.
Want more Information?
If you want to know more about Dravet Syndrome then head over to these sites, or give them a call. I’m sure these great Charities would be more than willing to help however they can.
Telephone – 07874 866937
Dravet Syndrome UK
PO Box 756
8301 Professional Place East, Suite 200
Landover, MD 20785-2353
I hope you found this information useful. If you are a person struggling with Dravet Syndrome in one way or another then I really hope this helped you in some way.
Also, Please check out some of our other posts. You can find them here
Thank you for taking the time to read this post.
- Dravet Syndrome Foundation – https://www.dravetfoundation.org/what-is-dravet-syndrome/
- Epilepsy Foundation – http://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome
- Dravet Syndrome UK – https://www.dravet.org.uk/
Author: James Burch
James is a health and fitness enthusiast who loves to try and help people. He writes from both knowledge and experience to give people guidance in all areas of health and fitness.