What Treatments Are Available?
The term heritable disorders of connective tissue refers to a wide range of disorders, each requiring a specific program for management and treatment.
In most instances, regular monitoring is important to assess, for example, the diameter of the aorta in people with Marfan syndrome, the extent of scoliosis (spine curvature) in people with OI and those with some forms of EDS, and whether there is protrusion of the spine into the base of the skull in people with OI.
For some conditions, specific metabolic treatment is useful (for example, vitamin B6 in people with homocystinuria, a metabolic disorder resulting from a liver enzyme deficiency). In others, systemic treatment with drugs like beta blockers is appropriate. Maintaining general health is also important for people with all HDCTs.
Due to the inflammation in these disorders, anti-inflammatory medications are the most common form of treatment for relieving pain and swelling.
Your overall health is important so should include a lifestyle plan to optimize health. See below.
Things you can do:
- Drink plenty of water and fluids to stay hydrated - not just coffee and tea
- Eat well - a balanced nutrition plan
- Maintain a healthy body weight
- Get plenty of rest and go to bed at a reasonable hour
- Follow your health care provider’s instructions
- Take all medication as prescribed
- Have routine follow-up appointments with your health care provider
- Regular physical activity
- Carry a list of medications with you
- Carry a list of your health care providers names and phone numbers with you