Volunteer Story: Caitlin (multiple sclerosis)

Volunteer Story: Caitlin (multiple sclerosis)

Caitlin Anderson tells her father Reed Anderson about her experience living with multiple sclerosis and her decision to be a part of clinical trial for MS at the 九九色影院. The trial has just ended and Caitlin reflects on her fears of deteriorating quickly without treatment and her hopes that her participation will help lead to a treatment or cure one day for others with MS.

Transcript

Caitlin Anderson: One of the phrases around MS is 鈥淵ou don鈥檛 get MS until you get MS.鈥 And so a lot of folks feel like they can鈥檛 describe their day or describe how they鈥檙e feeling to someone who鈥檚 not living with it because nobody understands and quite often it鈥檚 an invisible illness.

So after several years living with MS, a friend sent me an email message that said, 鈥淗ey look, here鈥檚 a study about primary progressive. You might be interested.鈥

Reed Anderson: Well here we are at NIH.

Caitlin Anderson: I think we first came at the end of May 2011 and now here we are at the beginning of June 2015. And it鈥檚 my 13th trip here. Still don鈥檛 know if it helped and now we don鈥檛 have access to the medicine. And nothing is approved by the FDA.

Reed Anderson: So hope and then disappointment? Or how do you think about that or feel about it?

Caitlin Anderson: The hope is that they continue to find good benefits and that the pharmaceutical company realize that it did help and maybe they could fast track it. Disappointment is that it鈥檚 ending. I feel like this has become another family. My biggest fear, Dad, is that this four years did something and has slowed my progression鈥

Reed Anderson: Right.

Caitlin Anderson: 鈥nd has helped, so I鈥檓 afraid that as soon as I stop the medicine, I鈥檓 afraid that I鈥檓 gonna go on a big downhill slide. That鈥檚 really scary.

Reed Anderson: Do you think about regrets?

Caitlin Anderson: No. Never. If I didn鈥檛 do this, if my buddies didn鈥檛 do this, and the friends that you meet in the hallway didn鈥檛 do this, there won鈥檛 be anything for the future. It has to go through that process.

I鈥檒l start looking for other studies that I might be eligible for. I want to make a contribution.

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