Ehlers-Danlos Syndrome is usually (though not always) hereditary, the result of faulty genes. I can look at my Mum and see various EDS pointers, even if she chooses to bury her head in the sand over the whole thing! Sadly I haven’t been in contact with my Dad for many years, though from what I remember he is also hypermobile.
I have my suspicions that Mast Cell Disease can also be inherited, particularly as it appears to be much more common in the EDS population compared to healthy controls. My Mum has the following MCAD symptoms:
- A history of multiple drug reactions, including hives
- A history of pressure hives
- Chronic low level depression
- Chronic nausea (for which she takes an anti-depressant, the type which fortuitously is also used as a histamine reducer!)
- GERD (she’s been on Protein Pump Inhibitors for stomach acid for years)
- Flushing after alcohol consumption
- Sneezing for no discernible reason (she uses a daily anti-histamine nasal spray), with chronic nosebleeds
- Gall bladder disease (she had hers removed 30 years ago)
- Generally itchy skin and scalp
- Like me, she doesn’t do well abroad, feeling ill with the change of climate and food/water, and even suffers in hot weather in the UK
Whilst it’s frustrating and sometimes frightening to have a newly recognised disease about which little is known, it’s also exciting to be on the cutting edge of this new discovery and to know that what is learned now, from us the patients, will benefit other people for generations to come. Maybe our children’s children, knowing a parent has EDS, will be screened from birth, not only for the obvious complications of a collagen disease but also for associated disorders like MCAD and Dysautonomia. We can only hope.