Osteoporosis
Osteoporosis is a significant concern for everyone with AIS, particularly for those who have had an orchidectomy (surgical removal of the testes) and have not been compliant with hormone replacement therapy (whether that be oestrogen or testosterone, or both).
Osteoporosis is caused by a change in the body’s bone-building cycle. Bone is usually constantly renewed through a process that removes old bone and replaces it with new bone. Osteoporosis occurs when the body removes bone faster than it replaces it, making the bones porous like a sponge. This makes the bone much easier to break. Osteoporosis is also sometimes referred to as low bone mineral density.
There are a number of things people can do to improve their bone mineral density:
· Calcium – Slows bone loss, although doesn’t build it up. Recommended daily intake is between 1000 - 1200mg. Dairy foods are a good source, but supplements are an alternative. (Seek medical advice though, because calcium supplements should not be given to people with various medical conditions like kidney disease).
· Physical Activity – Builds and maintains strong bones, particularly weight-bearing exercise.
· Quit Smoking – Smoking is known to negatively impact bone mineral density.
· Hormone Replacement Therapy – prevents bone loss, may increase bone mineral density and reduces the risk of fracture.
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Vitamin D
– helps the calcium being used to slow bone loss.
(Some forms may also help the body absorb more calcium from food. e.g.
calcitriol)
· Bisphosphonates – (like alendronate sodium & etidronate disodium). Decreases the amount of bone loss and increases the amount of bone growth.
Fosomax (alendronate sodium, MSD) is available on the Pharmaceutical Benefits Scheme (PBS), but only for those who have already had a bone fracture due to osteoporosis. It is the AISSGA’s hope that people with AIS have access to this medicine under the PBS regardless of fracture history because of the prevalence of osteoporosis in people with AIS. We suggest that medicine like Fosomax be PBS approved for people with absent/removed gonads and a medically indicated low bone mineral density. Any help and support from medical professionals in making Fosomax and hormone replacement therapy available to people with intersex conditions through the PBS would be appreciated.
There is an osteoporosis & Fosomax infoline in Australia that operates during weekdays between 9 am to 5 pm eastern standard time. Their contact number is 1800 062 844. Please call them if you require further information about osteoporosis and/or Fosomax.
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From dAISy, March 2002.
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NIH Osteoporosis & Related Bone Disorders National Resource Center |
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Osteoporosis
From
http://lifestyle.ninemsn.com.au/goodmedicine/factsheets/db/body/bones/86.asp
Osteoporosis is the medical term for 'porous bones'. Bones are made up of
fibres, calcium and other materials such as collagen. When these fibres begin to
deplete with age, gaps appear in the bone which weakens it's structure and
fractures are more likely.
At present Osteoporosis affects one and a half million Australians. One in two
women and one in three men over the age of fifty suffer from this condition
which is largely caused by a change in hormone levels. It is a painful and often
crippling disease, but if you catch it early enough, you can make an enormous
difference.
Symptoms of Osteoporosis include loss of height (over 6 inches); curvature of
the spine; chronic back or spinal pain; jaw shrinkage and loss of mobility.
There are three main ways to treat Osteoporosis. Firstly a 'Medical Cement'
treatment is used on the most severe cases, for patients whose bones have
actually been fractured. During surgery guided by x-ray images, the cement is
injected directly into the vertebrae. Just like mortar in a brick wall, it
strengthens the bone and restores movement. Pain relief is instant.
Secondly for women with milder cases of 'Osteoporosis' Hormone Replacement
Therapy (HRT) is used, but this is not suitable for everyone. A third option has
been invented called "Fosamax" which has fewer side effects and works
at a fast pace. Fosamax works by slowing down the process of old bone being
removed, which allows the bone-forming cells time to rebuild normal bone. In
theory it reverses the progression of Osteoporosis. It comes in the form of a
tablet and should be taken with a glass of water.
Cost :
Fosamax costs $20 or $3.20 for pensioners and is only available on prescription.
See your G.P. or phone 1800 066 889 for further details.
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