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10 Tips for Finding an Ehlers-Danlos Patient Advocate

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Finding a good EDS patient advocate can be like finding a needle in a haystack. But fear not, my bendy friends — I’ve got some tips to help you on your quest!

Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility is sometimes suggested to be a rare genetic disorder that affects the connective tissues of the body.

But it is not rare, affecting approximately 1 in every 500, according to scientists at MUSC at the Norris Lab. But while we wait for the medical community to get knowledgeable, we must advocate for ourselves.

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Positive reinforcement: Encourage and praise good behavior, focusing on the positives instead of constantly highlighting the negatives.Setting clear expectations: Establish clear, age-appropriate expectations and boundaries for behavior, ensuring that your child understands the rules and the reasons behind them.Natural consequences: Whenever possible, allow children to experience the natural consequences of their actions, helping them to learn from their mistakes and understand the importance of making responsible choices.Logical consequences: When natural consequences are not applicable or safe, implement logical consequences that are directly related to the misbehavior and teach the child how to make better choices in the future.Open communication: Foster open and honest communication by actively listening to your child’s feelings and concerns, validating their emotions, and working together to resolve conflicts or challenges.Modeling appropriate behavior: Demonstrate appropriate behavior and emotional regulation by managing your own emotions and reactions in difficult situations, providing your child with a positive example to follow.Parent-child collaboration: Involve your child in problem-solving and decision-making processes, allowing them to take ownership of their actions and develop a sense of autonomy.While discipline is necessary for teaching children about boundaries and acceptable behavior, relying on threats of consequences can have negative long-term effects on their emotional and psychological well-being.