CADASIL Family Forum (since 2007)
Sign up  |   | 
 
 
 


Reply
  Author   Comment  
Vanesa

Registered:
Posts: 1
 #1 
Hello everyone. My name is Vanessa. I recently discovered this site and I am so wrapped to share my experience with others. My boyfriend has been diagnosed with CADASIL in 2010, and since then, we have met the disease for ourselves, with the help of our neurologist. he has 33 years and their first symptoms appeared two years ago with a stroke, previously had migraine with aura crisis. Fortunately, every day, with treatment is good and is a sports guy with a healthy lifestyle.

We are from Spain and during this time we have been looking for some association or forum to feel supported, but in our country we have not found anything I do not know if any of you know any associations in Spain I would appreciate the information.

In April we got married after ten year relationship and we are thinking of making a small contribution to this partnership, within our means, and we are very committed to this fight.

We are currently on a waiting list to perform preimplantation treatment to have children free of the disease, which is our biggest dream.

We are also thinking of creating a forum for family members and patients in Spain, but we do not know where to start.
Any suggestions, support and sharing of experiences would be good for us because we had not been able to talk to anyone who has the disease and no family.

Excuse my English because it is bad and I have to support the translator and if someone who knows Spanish would give us great joy to talk to him or her.

Thanks for your time and tell you that we are very confident to have with you.

Thanks, greetings.

Vanesa




__________________
Vanesa
joanlynch21

Registered:
Posts: 1
 #2 
Welcome to the forum, Vanessa. I am so happy to see you on here.
Kellina

Registered:
Posts: 1
 #3 
Hi everyone, well my husband is, at the moment, in hospital after some kind episode...stroke, bleeding on the brain...he can't speak and seems lost. He was diagnosed with CADASIL two years ago. Should I expect any level of recovery? Is stroke harder to recover from when it's caused by CADASIL or is it just the same as a "normal" stroke?
wife

Registered:
Posts: 1
 #4 
Hi Vanesa

I am in a simular situation to you. My husband has been diagnosed with Cadasil in 2011 but as of yet he has no symptoms. We are at the start of our journey in starting a family and with the same goal as you - the child will be Cadasil free. I am going to make some posts about our journey to help others with this situation. I am going to remain anonymous as we only like our close friends and family to know about our situation at the moment as I know some of the choices we are going to make will be controversial in some people's eyes.

I'm sorry but my Spanish is extremely limited to the basics but hopefully you will be able to translate what I am writing.

SKALLOP

Registered:
Posts: 1
 #5 
Hello,

I was diagnosed just over a week ago. Over 30 years of intense pain and discomfort from headaches finally coming to a conclusion that has turned my family up side down. with almost 40 TIA's, hospitalizations, MRI's, CT's, drugs, drugs and more drugs my pain is called CADASIL!

I want to be strong but I have seen what Alshiemers and Dimensia has done to my Great Aunt and her family. It affects all in some way or another. I have grown children and a toddler, I have concerns of passing this to them. I suppose due to the lack in symptoms they should be safe; I just don't know.

I have always been able to fix what is broken all my life, I want to think I'm stubborn enough to be able to fix this!

That's all for now.
fadedjeans23

Registered:
Posts: 2
 #6 
Hello,
Thank you for sharing your stories. My husband was just diagnosed with CADASIL at the end of January. We are devastated. It's all I can do to just breathe. It is so hard to see his pain from migraines and not be able to do anything about it. I just don't know where to start or what to do. He is so much stronger than me & I'm trying to be strong for him. We have a 3 1/2 year old boy and he is the only thing getting me out of bed each day. The doctors aren't helping my husband and he has to wait a couple months before getting an appointment to even discuss this with a doctor. Our whole world has been turned upside down. Is there any hope? Where can we turn to for help for his pain? I am hopeful that we'll be able to gain support through this forum and find direction.
Thank you.
Previous Topic | Next Topic
Print
Reply


Create your own forum with Website Toolbox!