Wednesday, 29 January 2014

Rare Disease Day 2014

On the 28th February it is Rare Disease Day. This is the seventh official RDD, which is co-ordinated by EURORDIS. In the past more than 70 countries worldwide have taken part in planning activities and raising awareness for chosen diseases. The day aims to grab the attention of the public and decision makers about rare diseases and the impact they have people. You don’t just have to have an illness to suffer, suffering spreads to family and friends too. A lot of people who write about having Hypermobility Syndrome and Ehlers-Danlos online often refer to feeling alone when it comes to their health problems. This isn’t the way it should be as these conditions are not rare, they are just rarely diagnosed.
The Rare Disease Day website has ideas and information about getting involved. The theme of this year is care, better care and caring more! The RDD team have a Facebook page and Twitter feed with information updates. Worth a look if you are a rare disease sufferer. I’ve found a lot of people take comfort in knowing they can have a support system, and relief when they find one that suits them.


Friday, 24 January 2014

Eating for your joints

I stare at a pot of cod liver oil capsules on my desk at work every day. Not the most pleasant of views. Even the use of the words ‘liver’ and ‘oil’ upset me slightly. Of course they are extremely important for good joint care, as physios and doctors have told me time and time again, meaning I have a daily ten second meeting with Seven Seas. Cod liver oil capsules aren’t the only thing you can do to give your joints a helping hand. Hypermobility sufferers should take extra care in looking after joints. One way to do this is through one of life’s greatest pleasures- food.
Glucosamine is a good place to start with eating your joints healthy. It is a compound that is found naturally in the body and produces glycosaminoglycan, which is a cartilage repairing molecule. Oooh science. Your body will do its best to repair your joints should cartilage damage happen, but it will do an even better job if you have a rich supply of glucosamine.
Shrimp shells, lobster shells and crab shells all contain glucosamine. This may not sound like the most appetising collection of snacks, as the shells are often considered difficult to digest and are often discarded. However, if you are a budding chef and have an experimental streak in the kitchen, the shells can be ground down and added to soups and casseroles.
If this is all a bit much on the effort front, try sports drinks. While some are very sugary and calorific, there are lots of lower sugar and less calorie options around too. People with hypermobility, when they are able, should be doing exercise anyway, so having a sports drink when you are being a good person and working out makes perfect sense. It’s important to try and be helpful to your body with glucosamine, as the body makes less as we age.
Manganese is a helping co-factor in building cartilage and is much easier to add into your diet. The manganese will aid the glucosamine to keep your joints in good shape. Simply eating more beans, nuts, whole grains such as bread and cereal, seafood and leafy vegetables can give you a good dose of manganese. Drinking milk is helpful too.
Seafood is a bit of an emerging pattern here and it is a champion when it comes to omega 3 fatty acids. You can only get this from including it in your diet or taking supplements. Your body factory won’t be whipping any up on the production line, so it’s important to throw some in. The anti-inflammatory assistance from omega 3 helps to calm down pain and swelling in joints, something hypermobility sufferers know plenty about. Eating fish like cod, salmon, sardines and trout are ideal, as are walnuts and eggs. Flax seeds are also very good for omega 3, and can be found in some breads, or can be sprinkled on cereal or in yogurts.
Stepping away from fish, vitamins C and E should be featuring in food diaries. They help to produce collagen, which is a key factor for hypermobility.  http://bend-trend-hms.blogspot.co.uk/2013/11/science-and-no-more-silence.html
Corn, nuts, potatoes, oats, papayas, broccoli, tomatoes, strawberries and of course all citrus and zingy fruits are a good place to start.
A lot of activities that come with hypermobility are unpleasant and painful, so eating to be helpful is definitely a nice change from the clicking, cracking and aching of physical therapy and exercise.