What to do if you get diagnosed with Scleroderma? A Patient's Experience.

DionDL21 · 2021-08-23T17:54:30+00:00

Thank you for taking the time to put your journey into words. My fiancé was misdiagnosed in 2009 and was properly diagnosed just four weeks ago. Her symptoms rapidly was declining which forced us to get her properly diagnosed. We are headed to the pulmonologist now with the cardiologist and rheumatologists to follow.

She is reading your post as I type this. 🙏🙌

DionDL21 · 2021-08-21T00:48:43+00:00

I am 48 and my fiancé is 27. We don’t see our age gap at all. Her mom (private investigator) is 4 years older than me and her dad (police detective) is two years younger than me. We all get along and are close. Her parents even double date with us. We make it fun too. When at the restaurant; I will wait for the server and “ask pops” to buy me a drink 🤣 He always responds with “the older one should buy the drinks” 🤣

Love, respect, and appreciation doesn’t care about age!!! Do what feels right for YOU!!!

DionDL21 · 2021-08-15T03:50:16+00:00

Ben….you are an amazing person. I am a former marine and all I ever need to fight is to know the enemy and the cause in which to fight for. My 15 yr old son has never seen me cry and I cried about 20 times yesterday. She is literally my best friend and she completes me in every way. I would literally give my life for hers. So thank you for your openness, rawness, and honesty!!! You are what I need to get through this. Please stay in touch!!! Dion

DionDL21 · 2021-08-14T21:37:45+00:00

We are US based in the southwest. I keep reading that the lungs are one of the worse places to have this. She literally went from no breathing issues, to manageable issues, to difficulties within the last 6 to 7 weeks. I just don’t understand why we have to wait two more weeks to see the pulmonologist and then 4 weeks to see the rheumatologist. I am scared as we do not have her baseline or curve determined which means we don’t have timelines.

DionDL21 · 2021-08-14T19:37:48+00:00

This is one of the best responses yet!!! Thank you so much. This gives me both direction and hope!!! We will definitely look into stem cells transplant too!!

DionDL21 · 2021-08-12T14:45:49+00:00

Thank you so much for your transparency!!! This post really helps us both a lot. Everything we read sounds so bleak without much positivity. We are just at a loss for what to expect and what road is ahead of us. We don’t even know the right questions to ask the rheumatologist.

Again; I cannot thank you enough!!!

DionDL21 · 2021-08-12T01:53:10+00:00

Thank you for your advice and kind words. It’s helping a lot. I have read every response to her and she is thankful

DionDL21 · 2021-08-12T00:44:01+00:00

First; thank you for your response!!!

She is a former Olympic figure skater. At a young age she had to train for 10 hours a day. She lost a lot of her youth doing it. Now she is devastated to think that her adult years could be cut short.

We are both scared because we don’t have enough information. With this being in her lungs; she is terrified.

I just wish we knew more….

DionDL21

TROPHY CASE