Hypothalamic Hamartoma | How will I explain it to others?

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Understanding HH, what it is and how it will impact me or my loved one, is hard enough. But how will I explain it all to friends and family, when I am not sure myself?

For so many families, once we have embraced the diagnosis and work desperately to move on with the new circumstances, we quickly come to realize it can be just as hard for our families to know what to say and how to help. Some family and friends will just jump right in, and if you are in that fortunate situation, the journey will be much easier – but for the rest of us, here are some suggestions that might help others adjust.

HH Awareness - CJ Soeby

Keep it simple.

Explain to friends and family about the frustrations your loved one may be experiencing with HH. For many kids, there may be rage behaviors they cannot control, there may also be gelastic and dacrystic seizures that look like “the terrible twos or colic”. For adults there may be depression or a fear of loss of control. Compassion and understanding is the best way to deal with these conditions that medications cannot treat. It is never just parenting skills!

Carry cards explaining what seizure first aid looks like and read over them with anyone that may be interacting with your loved one – the stigma of epilepsy is what frightens people. Open and honest conversations bring knowledge and understanding!

Fill out the HH Trifold for Caregivers and also share with schools, Daycare, activity leaders – and have the talk about how HH affects the individual in their daily life.

Ask for help from those you trust, and be specific. Friends and family may want to help but don’t always know how or when. Let them take over tasks that free you up to schedule appointments, deal with insurance issues, refill medications, etc. They can do laundry, go grocery shopping, wash and fuel up the car, or  just be there while you take a nap! Let them do something to alleviate their feelings of helplessness as well!

Most importantly, understand that there will be times when people will stop and stare, or say something incredibly unkind (often times without really meaning harm). It will feel hurtful and can cause deep emotional scars for everyone involved. HH is not a disorder people can easily “see” like Downs Syndrome. Sometimes the challenges don’t have a well know description that can help people immediately “Get It”. Explain and educate when you feel it is appropriate or move on when it isn’t.

Trust your instincts and Breathe! You are not alone and have a community of families to help. Check out more information on our Hope for HH website and share with us on Facebook!



Seizure First Aid Form

HH Tri-Fold for Caregivers

Hope for HH Website

Hope for HH Facebook Page