INDIVIDUAL WITH LGMD: Tell

الاسم: Tell
Age: 26
البلد: الولايات المتحدة الأمريكية
النوع الفرعي لـ LGMD LGMD 2C / LGMD R5 y-sarcoglycan-related
في أي عمر تم تشخيص حالتك الصحية؟
9
ما هو أعظم إنجاز لك؟
My greatest accomplishment is continuing to live an active and meaningful life despite LGMD. I’m building strong relationships, adapting to challenges, and maintaining my sense of purpose and humor through it all.
ما هي الأعراض الأولى التي ظهرت عليك؟
My body was always hurting
كيف أثرت فيك LGMD لتصبح الشخص الذي أنت عليه اليوم؟
LGMD has made me more patient, resilient, and appreciative of the small victories in life. It’s taught me to problem solve daily, advocate for myself, and value the people who truly show up and support me.
هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية العضلية؟
لا يوجد
ما الذي تريدين أن يعرفه العالم عن LGMD؟
I want the world to understand that LGMD is often invisible at first, but it deeply impacts strength, mobility, and energy. People with LGMD are still capable, driven, and full of life. They just navigate the world differently and deserve accessibility, respect, and understanding.
ما هي أكبر التحديات التي تواجهينها في التعايش مع داء الليثيونيز الغدد الصماء؟
The greatest challenges are the gradual loss of strength and independence, and adapting to changes in mobility over time. Everyday tasks that used to be simple now require planning, support, or adaptive equipment. There’s also the emotional side of learning to adjust while still trying to live fully and not let the condition define everything.
إذا كان بإمكانك "علاج" مرضك بالتهاب الغدد اللمفاوية الروماتيزمية غدًا، فما هو أول شيء تريد فعله؟
I would want to experience freedom of movement again. Walk, travel more easily, and do everyday things without needing to think about limitations or fatigue. I would pick my son up and carry him. Be a “normal” dad.






