Stephanie's Story - Life as a Thirty-Something Female Entreprenuer - with a Chronic Illness

An extemporaneous video diary from the found of WELLalarm (www.wellalarm.com) about the day to realities of a thirty-something female entrepreneur in NYC - with a chronic illness.

Category:

People & Blogs

Tags:

• CIDP
• IVIG
• chronic illness
• entrepreneurship
• wellalarm stephanie cion

[Oldken29]

Hello Sephanie. I am a 19 year + survivor of CIDP, and I think you are doing a wonderful thing. There are many stigmas attached to being chronically ill, and I am sure more so for a younger person. I was 42 years old, in my dream job, lot's of success, and had the " rug" pulled out. Nine months of total Paralysis , IVIG, 15 months of PT/OT/ and all, and I was functional. Life has changed, but as you said, we are NOT our illness. We are people. And I have been staying up. SchaferKKK@aol.com

[joeyeastwood69]

Way to go Stephanie !...I too was diagnosed with kidney disease at 33, which almost killed me at 37. I am now 43 and in remmission. Loved the way you took your illness and transformed it into something helpful. I can't tell you how good it felt to hear your story. It helped me not to feel so alone...you are a beautiful person. Keep it up !

[kahvac]

Stephanie, I think you found your calling in life. You have a great visual personality are very believeable behind the camera and sincere, not to mention very pretty. hang in there you have a lot to offer and this is the golden age of BioTech big advances are coming very soon for the imune system ! You are going to make it just fine. I'll be watching for more videos. Your the best !

[Durkin34]

So admire how open and honest you are about your condiiton. Your words have given me some comfort as I am a 34 year old male and was diagnosed with CIDP about 3 weeks ago. Always pretty fit and worked quite hard but it crept up on me for the last six months or so. Have just done 5 IVIg treatments last week and need one every month. Hope you are making progess and maybe see see another post from you soon ;)

[pinkcybercat]

Glad someone's taking a stand on this. You're so right about the social stigma - I've had to deal with it more than most (I'm seventeen now, and I was diagnosed with CIDP going into high school, so you can imagine the hell *that* was). Anyways, please keep making your videos! It's hard to find anything on YouTube about CIDP, and impossible to find people willing to talk openly about it the way you do. Keep fighting :)

[suem53]

Stephanie, I'm sad to see this happen to such a lovely young woman. I'm 56 and this got me last September just after my husband and I returned from a holiday in Europe. I was a very active woman, jogging, gym etc., walked everywhere in Europe so this was a shock. Now walk around house in wheelie-walker and outings in wheelchair. Now having IVIG fortnightly. Are you walking now? I am hopeful I will walk again one day as I have a lot more I want to do. I'll look forward to your next instalment.

[stefsonline]

thats really interesting - i actually think other than myself you may be the youngest person i have ever heard of with it. i would love to chat with you - you can find me on skype at stefsinquiring or on aol im at stefsatwork. (i dont love to post email addresses or phone numbers on here as it becomes a huge spam issue but i would love to hear from you!)

[cirocc7]

Hey Steph....was athletic all my life as well and at 37 hit with CIDP. I currently receive IVIg every month to keep it at bay. Also, live in NYC and and can identify with just about everything you've said.

[fashionmista]

I cannot wait to hear more about how you are living with a chronic illness. You will enlighten many. Yay!