Specific Diagnoses
We have written the following fact sheets about conditions in the Kniest, SED and SMD family of diagnoses. We will add more fact sheets soon!
Suggested questions to bring to a medical visit.
Find a Doctor
It’s important to see a doctor who has experience with skeletal dysplasias.
- LPA online’s list of Skeletal Dysplasia Clinics
- Help with paying for travel to medical clinics: https://miracleflights.org/
Exercise & Movement
This section lists exercises to try and alternative/complementary therapies to consider. Before beginning and alternative/complementary medicine or supplement program, contact your medical provider.
The key is to be as active as possible and exercise in a way that protects your joints and bones. Exercise is important, but make it fun! Try some of the activities below and see what you enjoy. Modify activities if they don’t work with your body. For example, find a yoga class is a sitting only class.
Aerobics: Helpful link on adaptive aerobics http://www.turnstep.com/Adaptive/index.html
Bicycling: This can be a great low-impact activity. Consider biking on roads or a stationary bike.
- Awesome Joni custom bikes for people with dwarfism from the UK: https://bikerumor.com/bikes-for-people-with-disproportionate-dwarfism-islabikes-joni/
- Youtube video of a person with dwarfism and a custom Bike Friday:
https://www.youtube.com/watch?v=nqw4ZAZpf-M - Triathlete with dwarfism: https://www.trainerroad.com/blog/facing-challenges-and-overcoming-limitations-with-triathlete-zach-josie/
Dancing: Dancing can be great exercise for people with KSG.
- Meet Keeshlinooo, a 3’5″ hip hop dancer, https://www.youtube.com/watch?v=YkocnJ9b_AE
Low Impact Aerobics:
- Jillian Curwin, an aerobics instructor with dwarfism
Rowing: Rowing is fun exercise. Try rowing and see if it works for you!
- Meet rowers for Little People of America, https://www.concept2.com/news/sport-all
Sit and be Fit Exercise: https://www.sitandbefit.org/
Swimming: This is one of the best exercises for people with dwarfism. It puts little stress on the joints and is a great workout. Swimming and water exercises are a fantastic way to strengthen back and abdominal muscles.
Many people with KSG love swimming! It’s a great low impact exercise for long-term health. Consider water aerobics and water walking. You may need some modification for water exercise.
More links on swimming:
- Fun water video of a pool High Intensity Interval Workout. Get a great cardio workout with no impact! Try some of the moves in this awesome video and see how they work with your body!
- Dwarf Athletic Association of America Swimming page: http://www.daaa.org/swimming.html.
- Zach Shattuck, little person and paralympic swimmer: https://www.instagram.com/zshattuck96/?hl=en
- Article about Performance Capacities of a Person with Disabilities
Walking: It is important to wear good shoes when walking. Check out the Finding Shoes for people with dwarfism section.
Water-Walking/Water-Jogging/Water Aerobics: Exercising in the water is a great choice! The water provides resistance, but the activity is low impact. If the water is over your head, consider getting a life vest that is designed to hold you vertically in the water or some ankle weights and a flotation belt. If your feet do not touch the floor, consider sinking a step stool with a non-skid surface on it or using a floating ‘noodle’ to keep yourself a float.
- Fun water video of a pool High Intensity Interval Workout. Get a great cardio workout with no impact! Try some of the moves in this awesome video and see how they work with your body! Check out other aqua exercise from fitmotivation.
- Try ankle weights in the water for better buoyancy.
- Use floatation for deep water aerobics, such as the water horse.
- If you have a short torso and need more floatation, combine a water horse with a floatation belt.
- If you have a short torso and need more floatation, combine a water horse with a floatation belt.
- A news article about two girls with SEDC who are synchronized swimmers.
Alternative Therapies
Movement Therapies can be low impact and great and helpful to people with KSG.
The Alexander Technique – The Alexander Technique teaches the body to restore balance and coordination. A person trained in the Alexander techniques looks for movement patterns which impede freedom of movement and help people move more easily. The way you use your body effects digestions, mental clarity, and immune response. Feldenkrais – Feldenkrais is a series of visualization and movement exercises designed to shift habitual movement patterns, allowing new and better ways of movements. There are two main ways of teaching Feldenkrais: Function Integration using hands on approach and also in Awareness Through Movement, a class setting.
Rolfing – Rolfing is a technique of moving the connective tissue that surrounds muscles in order to lengthen and balance the body along a vertical axis. Distortions of this balance can come from many sources including accidents and emotional traumas that have never been released. A complete rolfing session consists of 10 sessions progressing from superficial to deeper layers if tissue and eventually covers
T’ai Chi – Tai Chi is a Taoist Chinese martial art form of meditation in movement, combining mental concentration with coordinated breathing. It is a series of slow and graceful movements.
Yoga – Yoga is a series of poses and exercises that help people achieve a state of clarity and make the mind and body one. It is supposed to help people become unified with the universal spirit. Yoga concentrates on posture and alignment and control. There are many different methods of Yoga.
Disclaimer: consult a medical provider before starting a new therapy.
Clinical Trials
- Search the US National Institute of Health Clinical Trials Page: https://clinicaltrials.gov/ . The purpose of ClinicalTrials.gov is to provide information about clinical research studies to the public, researchers, and health care professionals.
- National Organization of Rare Diseases Clinical Trials page: https://rarediseases.org/clinical-trial/