There are three types of SB each with their own characteristics:
Myelomeningocele is the most serious and more common of the two cystic forms. The spinal cord is damaged or not properly developed. As a result, there is always some paralysis and loss of sensation below the damaged region. The amount of disability depends very much on where the spina bifida is, and the amount of affected nerve tissue involved. Bladder and bowel problems occur.
Meningocele development of the spinal cord may be affected but impairment is usually less severe than myelomeningocele.
Spina Bifida Occulta (hidden form) This is a mild form of spina bifida, which is very common. For the vast majority of those affected, having spina bifida occulta is of no consequence whatsoever and is often only discovered on an x-ray of the back for another complaint.
For more in depth information click here (The above information is used courtesy of www.shinecharity.org.uk.
A person with Spina Bifida can ski and enjoy the mountains with family and friends! Ski 2 Freedom has many clients who have discovered the joys of the snow and magic of the mountains. Most ski schools which have qualified instructors for disabled and adaptive skiing and snow sports should be able to work with children and adults who have mobility issues and conditions relating to Spina Bifida.
Confidence on the snow is the key issue and it is well worth investing in the excellent private tuition that is on offer by the ski schools. Once the person has gained the basic skills then there is no reason why the family cannot all ski together- it is also a good idea to return to the same ski resort for a couple of winters just to maintain that special relationship and new found confidence.
Your initial enquiry to the ski school should include as much background information on the skier as possible. If the skier has skied before, it can be incredibly useful to dig out old photographs or even video footage of them skiing previously to send to the ski school so that they can get a good idea of their level. Discussing in detail the skier’s specific needs and condition(s) is VITAL to ensure both the ski school and you know what is going to happen and to ensure you are matched with the right ski instructor and/or equipment. This may include a discussion about other associated health and social needs such as epilepsy, asthma, communication and social awareness skills and any recent medical developments. This is especially important in cases of Spina Bifida due to symptoms being variable depending on the site of the lesion and also due to there often being other health issues related to this condition.
In some cases when a person is new to the slopes, not a very confident skier or there are mobility issues, then why not have an hour or so on the piste with a qualified ski instructor 1:1, then take the opportunity of hiring the instructor to whizz your child around the slopes with the rest of the family using a Tandemski or sit-ski (dual ski pilot) - he or she gets the chance to relax a bit and be with brothers, sisters, parent and friends! A lot of fun and laughter can be had!
Many of the ski schools have a good idea of what is required especially when it comes to equipment and clothing, in particular the ski boots. Do ensure that you ask the ski school if they can recommend a ski hire shop for such items. As mentioned previously, there will be differing degrees of impairment depending on the nature and site of the Spina Bifida lesion. Therefore every person must be treated as an individual and their particular degree of disability will determine whether special ski equipment is required and if so what kind.
In Europe, the US, Canada and worldwide there will be ski instructors with experience in disabled and adaptive skiing tuition, therefore it is more than likely that whichever resort you choose there will be someone who will be able to help you. However, going somewhere where skiers with a similar condition have gone before, may well be a source of comfort and reassurance. We are delighted to be able to list below all of those schools, of which we have personal experience, but please note that there are many more not listed here ( clicking on the link will take you to our Accessible Resort Guide for further information on the ski school and resort): If the resorts below do not yet feature on the Accessible Resort Guide please contact us directly at email@example.com.
ESF Arcs 2000
ESF Belle Plagne
ESF La Rosiere
ESF Les Gets
ESF Val d’Isere
ESF Val Thorens
Evolution 2 – Tignes
Evolution 2 – Val d’Isere
Oxygene La Plagne
ZigZag International Ski School – Samoens
Active Motion – available most Swiss ski resorts
Handiconcept - Villars
European Snowsports Verbier
Redpoint Adaptive Ski Programme – Zem am Zillar
Freizit – Schladming
Ski 4 All – Zell am See
If you would like information on other ski resorts please contact us.
We are delighted to be able to share information and feedback from families who ski and understand the problems associated with Spina Bifida on our Personal Stories page, including one of our patrons - David Proud.
The Shine Charity- a UK based charity dedicated to providing information and support to people with all types of Spina Bifida and their families
08 Feb, 2019
Family ski holiday became a reality for a young mother who had a stroke six years ago. With help…
04 Feb, 2019
Skiing with Kleefstra Syndrome in Montgenèvre is a dream come true for young Ollie Ski 2 Freedom …
27 Jan, 2019
Finding a disabled-friendly holiday can be a nightmare for families with additional needs. ANTONIA…
04 Feb, 2019
Family ski holiday with Kleefstra Syndrome in Montgenèvre (France) Ski 2 Freedom Foundation - …
21 Feb, 2018
Some ten years ago my husband suggested that I (together with our two young daughters) should go on…
10 Jan, 2018