Friday, September 19, 2014

Marfan Syndrome Awareness Blog Train

I am shy and I hate talking about me, my life and most of all about my problems. But my dear husband is in hospital since 15 days and doctors don’t know what is his painful and strange disease… He had a ton of exams, scanners, biopsies, blood tests (till 5 per days !) and still no result ! Today he has a PETscan, we still hope they find what is this illness he suffers from…
Waiting that, my husbad doesn’t have a private Health Insurrance (what we call ‘Mutuelle’, in France), it is a private society we pay for, each month, which take charge of the bill that the National Social Insurrance doesn’t take (around 20% of the fees). So we yet have a bill of 2000€ (around $2560 !) to pay… I, by my side, still no have job, still looking for one, so times are hard… So please, help us by visiting my own store Caroline B.fr, or my Raining Digital Store for CU products, or MyMemories Store and possibly, if you find something that suits you…. well… please, help us. Thanks a lot.

So I have not much time to design between school for Léa and hospital, but I take part in another awareness blog train, for the Marfan Syndrom.
People are born with Marfan syndrome and related disorders, but they may not notice any features until later in life. However, features of Marfan syndrome and related disorders can appear at any age. Some people have many features at birth or as young children. Other people develop features, including aortic enlargement, as teens or even as adults.  Some features are progressive, meaning they can get worse as people age.
All of this makes it very important for people with Marfan syndrome and related disorders to have ongoing monitoring, especially for life-threatening aspects of the condition like aortic enlargement. An accurate and early diagnosis helps to ensure proper treatment. Some treatments can prevent symptoms from getting worse and ultimately save lives.
Read more here : http://www.marfan.org
Here is the fabulous full kit you could collect :


And here is my part :
CarolineB_Marfan_Preview
(Too late, but sign up to receive my newsletter and keep track of the new freebies.)
I will develop this minikit next month to have a full big one (if luck let me free time).
Here are the other stops :
Dea’s Design
Angel Wing Scraps
Rhonda B. Studio
Marniejo’s House Of Scraps
Ostrea Designs
Dreamn 4 Ever Designs
Ann’s Scrapbook Heaven
Caroline B.
Shuckclod’s Stuff
Melissa’s Scrap Designs
 
Have a good day.

5 comments:

Unknown said...

Gorgeous kit for a horrible disease!! Hope one day to find a cure for this disorder!! Thank you for bringing it to light and sharing your lovely work!!!

MomOnceAgain said...

Thank you for sharing - I hope the doctors have found out what is wrong with your husband and that he is on the road to a full recovery!

gypsymonkeyscrap said...

Thank you for the lovely kit and for supporting a great cause. I am sorry to hear of your health problems. I can't imagine the amount of worry and stress that you are going through. Many good thoughts.

Unknown said...

You are all welcome, Ladies, and today, (at the end ! after 19 days in hospital) they discover what his disease really is : it is Horton Disease, so.... now a ton of corticoids for looooong time, and he is considered at 100% touched by a cardio-vascular disease, by National "Securité Sociale", so they will take also the big bill!! What a relief !!

Pam K said...

Thank you for sharing ...