Wellness

[gloriajean]

My daughter today was diagnosed as having EDS. There is no cure, lots of pain. So far she needs to have an EKG because sometimes that affects the heart. Then counseling. And is referred to another pain management doctor. The Specialist, is the only one in town who deals with this, and she is very good, and is booked so far in advance, so her next appt. is in 2:1/2 months. 

She's the mother of the twins who are now a year and a half. 

[Kachina624]

@gloriajean. I'm so very sorry to hear of your daughter's diagnosis.  I'd never heard of this condition so looked it up.

https://www.ehlers-danlos.com/what-is-eds/

It sounds as though it's similar in some ways to Fibromyalgia  in that it affects individuals differently and to different degrees.  It must be considerably more serious than fibro.

I hope your daughter has an excellent specialist and can receive great treatment so she can continue her life with her family.  She's lucky to have you and a great support system.  I'm sure there will be many people here praying for your family and wishing you the best.  Please keep us up-to-date on how she's doing. 

Thinking of you.

[qualitygal]

@gloriajean, 

Gloriajean I agree with Kachina and will be praying for your daughter and the family. I'm sorry this is going on for all of you.  Best wishes to all.

[Carol Diane]

gloriajean, my daughter's husband's family is diagnosed with v-EDS so I am much too familiar with all the forms.  I am praying that gene editing will eventually be able to cure this disease. I pray for relief from the pain and issues your daughter has to deal with.  Do the twins have to be tested yet?  My grandchildren did and they are 3 and 5.

[meallen616]

@gloriajean,So sorry to read about your daughters diagnosis. She is lucky to have a great support system. Miss seeing pics of the twins!

[cherry]

Gloria my dear friend ,I am so sorry to read of this sad news. Be assured she will be in my prayers

[happycat]

I'm so sorry, @gloriajean. Your daughter will be in my prayers as well.

[gloriajean]

Thank you all for your prayers which are greatly appreciated!! I'm feeling a bit down right now, but it all will be okay.  God's Will be done.

[Noel7]

@gloriajean

EDS is like a spectrum disease imo,  It's not always awful for everyone, it can be managed.  At the other end of the spectrum, there are people who need braces to walk.

It's a collagen problem, bones can slip out of place, you have to learn to be careful about movement.  It can also affect the skin which tears easily.  Your daughter needs it on her medical record, in BOLD.  Her doctors need to know of her diagnosis.

I was diagnosed with EDS several years ago.  My daughter also has it. 

[Noel7]

Background

"Ehlers-Danlos syndromes (EDS), the name given to a group of more than 10 different inherited, clinically and genetically heterogeneous group of connective-tissue disorders, involves a genetic defect in collagen and connective-tissue synthesis and structure. In 2017, a new international classification was proposed with 13 different variants. [41]

Ehlers-Danlos syndrome can affect the skin, joints, and blood vessels. This syndrome is clinically heterogeneous and has been classically divided into six types (classical, hypermobile, vascular, kyphoscoliotic, arthrochalasis, and dermatosparaxis), with the underlying collagen abnormality being different for each type."

My daughter was diagnosed as hypermobile, I have the larger diagnosis of EDS.