06/04/2015

الاسم:  Rona     العمر:  35 Yrs Old 

البلد: Philippines

النوع الفرعي LGMD: Unknown

 

في أي عمر تم تشخيصك:

I was diagnosed when I was 21 years old.

ماذا كانت أعراضك الأولى:

First I noticed  I began to walk with a “waddling” gait because of weakness of the hip and leg muscles. I had trouble getting out of chairs, rising from a toilet seat and  climbing stairs. I was losing my balance to when standing.

هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية الجنيني:  No.

ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع داء الليثيوم المتعدد الكيسات؟:

The greatest challenge for me is having a hard time walking on my own. Occasional falls that sometimes cause me injuries. Sometimes my physical limitations keeps hindering of things that I can do but it motivates me also to try my best to stay stronger and better.

ما هو أعظم إنجازاتك:

After being diagnosed with LGMD, I have always wanted to be positive in life. I had the most challenging job and that is  being a sales assistant as standing for eight hours was hard. But with a lot of patience I made it.

I love swimming and going to places that even I find it difficult to go. I dare to live out the closet of limitations. Because I always believe that I am  never a failure unless I haven’t tried it.

As a mother of two children and a wife I believe that I tried my very best to support the family and to stay strong for them. I choose to be productive and efficient in all the things that I do. That is why I want to be a blessing to others by doing some community work as a volunteer teacher in our community helping children to enhance their skill and knowledge in school by giving them after school service program. All things work together for good if we just see things in a positive way. I stay strong and determined because there a lot of things that I can do and be thankful of.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

I know that I have gained respect and trust for others and for myself who have gone through tough, times and triumphed, by placing myself in their shoes, whether they have disabilities or not. I was more hopeful in spite of the sickness that I have there is still a PURPOSE  to succeed. I open my arms to LOVE and HEALING…My legs carry me forward in life…My disability sometimes indicates a fear of moving forward or a reluctance to step through….but…Life is beautiful…nothing is perfect in the world I live in…My physical limitations is not a hindrance…All it takes to live in peace with your age is a positive outlook on life…a happy personality…a lot of smiles…Know that inner beauty and inner strength are the mark of a winner in life, not the age or outer physical appearance. WE are all a WINNER…

ما الذي تريد أن يعرفه العالم عن LGMD:

We are strong to Live a life of LGMD!

إذا كان من الممكن "علاج" مرضك بالتهاب الغدد اللمفاوية الروماتيزمية غدًا، فما هو أول شيء تريد القيام به:

I want to run and drive.