LIVING

With EoE, Allergies, Asthma and a G-Tube

How CURED helped me

As you know I spoke at the CURED 2017 conference last week. It opened my eyes. I knew that we were in our own little bubble world of EoE at my house. What I didn’t realize is that I also had a wall up around that bubble.

I was aware of what I thought CURED did. Attending this conference really brought me back to reality and showed me CURED is so much more.

CURED brought together professionals from all over the globe.

20171025_212054.jpgDo you even realize how amazing that is? Because of CURED doctors from all over the world are able to gather to share and learn about eosinophilic diseases. They are gaining knowledge and that means they are coming closer to a cure.

On Thursday I listened to many doctors and researchers discus different aspects of eosinophilic diseases. What really stuck out to me was hearing others in the profession stand to ask questions when the speaker was done. It made me realize that not everything is known. Doctors are still learning. They were there hoping to hear answers just as I was.

Friday was the same. What really brought me back to reality was hearing just how rare my kids still are. We are under 5% with how extreme their diets are and even a smaller percentage being that we have so many with EoE in our family. It opened my eyes, reminded me that I need to be fighting more for them.

I never realized the amount of research that goes into finding a cure. Do you know? It’s not just about finding a pill. They have to look at environmental factors. Is something triggering the disease to flare? How about genetics? My family has 5 people with EoE, other families have 1. They look at what the cells are doing and why they’re doing it. How food allergies play a roll, including environmental. I could go on and on. All of these different doctors are digging in at every aspect. It’s much, much more than just finding a pill.

Speakers at the conference.

Photo credit :Ting Wen

I left that conference feeling amazing. Just knowing all that is going on to help my kids eat one day. This group of people is really trying. I know this because they came to CURED to share and learn more. The amount of compassion they showed me after I gave my speech really reinforced that. They don’t really know what goes on at home, and I really pray that after hearing my speech it will push them to work harder.

Monday after the conference we visited our GI for an in office check up. I had a lot of questions to ask. Questions I wouldn’t have had if I hadn’t been to the conference. What I realized was that a lot of the information I had gained is still unknown to many doctors. It even came to the point during our appointment that our GI sort of released us. She told me if I wanted to get a 2nd opinion she would understand. If I hadn’t been to the conference that never would have crossed my mind. I was stuck in such a rut with Gage and Tinleigh that I never imagined seeking the advice of another doctor. We’ve done a blood draw on Tinleigh to check her cortisol levels while being on the steroid. Gage is having one as well. Our GI told me that if Tinleigh’s levels are low she really won’t know what to do with Tinleigh at that point. I think it is time to move on.

So we are starting a sort of new adventure. I am now GI doctor hunting. That seems so scary to me. I truly believe our GI cares for us and really goes out of her way for us at times. How will I ever replace that?

I am a believer that everything happens for a reason. The opportunity I had to go to the CURED conference was two-fold. It opened my eyes to move forward and find a new GI that can help my kids come closer to a cure. It also showed me how important CURED really is. CURED does much more than raise money for research. It brings people together in the industry from all over the world that want nothing more than to find a cure. It allows patients and family members to join together in person. They have a chance to hug, cry and feel like they’re not alone. It allows children suffering from Eosinophilic diseases come together to meet others going through the same tough life. Because of CURED I left feeling a renewed hope that seeing my kids tube free in the future will be a reality, not just a dream.

So from the bottom of my heart,

Thank you, Ellyn, for creating CURED and bringing this mom back to life in the fight to help her kids. Thank you Shay, and everyone, that makes the CURED conference possible.

Advertisements

October 26, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 2 Comments

What I got from The Lorax

I took all three kids to see The Lorax. I’m not going to go into all the messages it was sending like save the earth, industry is bad, people just want to be rich and are greedy. I’m sure my 3 and 6 year old didn’t pick up on that.

Anyways, at the very end of the movie there was a Doctor Seuss quote

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

I thought yep, that’s why I blog.

I care so very much and want to raise awareness.

I want others to care and I want everyone to donate to help find a cure.
Take time today and donate a little, or a lot!
It’s up to us to help.

CURED

March 24, 2012 Posted by | LIVING | , , , , | 1 Comment

   

%d bloggers like this: