School and Social Activities Were Nightmares for Me As My Peers Would Ask About My Shaking

March is National Essential Tremor Awareness Month and throughout the month we will be “raising the curtain on essential tremor” to help others understand what it is and the challenges people with essential tremor face. Everyone has a story to tell. Please share these stories with others.

By Loide Nampala

I am Loide Nampala. I am 23 years of age and from an African country Namibia. I would like to share my story for essential tremor awareness month to #RaiseTheCurtainOnET.

As a baby I had epilepsy. Then in my toddler years shaking began in my hands. As I got to pre primary school it affected my writing and social skills to the point where I tried to hide it. But I did this by making my body stiff so my peers always would ask questions wanting to know if I was sick or cold or nervous. I also developed a feeling of being scared of the unknown and always living in fear. As I was growing in years the tremors got worse in my primary and high school year, when it went to my legs and body. My parents took me to the hospital where I went through psychological treatment, which didn’t work.

School and social activities were nightmares for me as my peers would always ask me about my shaking, and sometimes laughed at me. I pretended to be sick and skipped school just to avoid being bullied. I did very bad in school and always repeated grades as I tended to avoid being bullied or asked questions. I avoided social activities even though I had the passion to take part in debate. It got to the point where I thought I was crazy and went to the mental unit to talk to a psychiatrist who then diagnosed me with generalized anxiety disorder. I was also referred to a neurologist for the shaking and was diagnosed with essential tremors and dystonia.

I just want to be at that point where I can live in the moment by accepting my condition because it limits me from daily activities and my goals.

I would like to ask to be part of a support group besides the one on Facebook so I can connect with people with the same condition as me. I would also like to take part in all activities and awareness programs.

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Educating Family Physicians about ET and the IETF

By Patrick McCartney,
IETF Executive Director

One of the pillars of the International Essential Tremor Foundation’s mission statement is “to provide hope to the essential tremor (ET) community worldwide through awareness.”

As we all know one of the biggest challenges we face is raising awareness for ET. This is a daily task for our staff. We use a variety of channels including social media, printed materials, and talking with patients, caregivers, and family members every day on the phone who have questions about this disorder.

Another way we try to raise awareness is by attending national conferences and sharing a variety of information on ET. October 10 through 12 I attended the American Academy of Family Physicians Family Medical Experience in New Orleans, LA. There were more than 5,000 family doctors attending the event. This is the third year we have attended and it’s a great opportunity to share with family doctors the resources the IETF has available for them and their patients.

I shared our Patient Handbook, IETF brochure, ET vs. Parkinson’s fact sheet, medical alert cards, IETF pens, and Tremor Talk magazines with them. The ET vs. Parkinson’s fact sheets were so popular I ran out the second day and had to make more copies at the hotel for the last day of the show.

A couple of takeaways from this conference:

  • Every doctor I talked with had treated ET patients, but not one of them was AAFP Conference 2018aware of the IETF.
  • Several of the doctors I talked with have ET or have family members or friends who have it and were excited to see the resources we have to share.
  • Everyone I spoke with said they would share our information and/or direct their patients, friends, or family members with ET to the IETF either through our website or our toll-free phone number.

I would encourage you, as I encouraged these doctors, to be advocates for ET and the IETF in your community. There are a lot of stereotypes and stigmas associated with ET. Don’t let them prevent you from sharing your story and explaining the daily challenges you face because of ET. And let others with ET know they are not alone.  There are IETF support groups all around the country. You can find a listing of them on our website.  If there is not one in your area consider starting one or join our online support group on Facebook (Essential Tremor Awareness Group).

We appreciate your support and if you have any questions please don’t hesitate to contact the IETF at 1-888-387-3667 or info@essentialtremor.org.

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