- Ross Syndrome
- Interviews
How did all start?
Do not know ,
Learned one of my pupil dilated in 6th grade, about 12years old.
Learned about right arm and right upper chest and upper back not sweating around 2019, soon, found right leg also not sweating.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I did not understand it at the time when doctor told me, there is not much can be done, it’s probably the gene.
For what medical specialties have you been treated? What has been the most useful specialty for your?
None.
What has been the most useful thing for you so far?
I had frozen shoulder, coughs/sneezes often for no reason, often have the symptoms of a cold.
Taking vitamin regularly, started taking electrolytes regularly after a dehydration hit.
Exercise in water help relax the cold symptom.
Not anything helping the syndrome, but just to improve quality of life.
What have been your biggest difficulties?
Hard to tell the distance for cars, hard to make unprotected left turn.
Panic attack when there is height difference.
How has your social and family environment reacted? Have your social or family relationships changed?
I have been living like this for long and moved away from families, not any close friends to notice. I have been having pains that comes and goes, and there seemed no cause for it. So did my temper. Somehow I ended up alone.
What things have you stopped doing?
Stopped cooking due to shoulder issue, and also back pain issue
What do you think about the future?
Hope there is research find the cause and maybe even cure, not sure how could I help.
So far, which years have been the best years in your life? What have you done during them?
This year is the best, I have started therapy for frozen shoulder and it helped, then learned I have scoliosis and started physical therapy which helped relieving my upper back and chest pain. More physical therapy helped reliving lower back pain. My breathing is better with recovery from right chest.
What would you like to do if you didn’t have your condition?
Live a regular life without so much pain. Love someone and share my life with him.
If you had to describe your life in a sentence, what would it be?
I have been trying hard to live a regular life with a lot of lucks and hardships.
Finally, what advice would you give to a person in a similar situation?
Try your best and keep up hope.
