At the beginning of last week I was diagnosed with Hypermobile Ehlers-Danlos (HEDS). I had already been told I didn’t have it by two other doctors, plus the doctor I was seeing at the time was supposed to be helping me with my fibro, so I was really surprised when I received the diagnosis. I had spent several months thinking I had hypermobility (even after the two doctors told me I didn’t), so I wasn’t shocked. It’s nice when a doctor confirms what you know in your heart. This doctor was phenomenal! He and his staff made me feel like a VIP by treating me in such a way that I knew they were there to help me. All doctors should be there to help their patients, but I have rarely felt like more than just another appointment to hurry through. Anyway. The doctor gave me the HEDS diagnosis (he told me I was “stretchy person”), made it my primary issue (instead of fibromyalgia), and filled my schedule with new tests and appointments. I had blood work done, started physical therapy, am scheduled for an echo-cardiogram (to make sure my heart valves aren’t stretching), and am waiting to get custom orthotic insoles made. Eesh!
So, what does this new diagnosis mean? I have a more solid diagnosis than fibromyalgia and will possibly be taken more seriously from now on – yay! I now understand all the weird issues I’ve had since I was a child and have a better understanding of why I feel like I do these days. I have a better idea of what to expect in the future and have a solid plan for improving my quality of life. It also means that I now know that every child I give birth to will have a 50-70% chance of having HEDS as well. 😦 The doctor gave me a referral to genetic counseling; it took me awhile to understand the full gravity of what that meant. The thought of passing on pain and problems to my children is very troubling and it had me in tears for awhile after the appointment was over. But then I realized that, despite all the pain and confusion in my own life, I am very happy to be alive and have no regrets. It’s true! At least one mother with HEDS I’ve spoken with feels very strongly about NOT passing it on to more children (she already has one, a daughter who did get the HEDS) and is getting her tubes tied. But 90% of the other mothers with HEDS I’ve spoken to have no regrets, even though the way was fraught with pain, loss, and the discoveries that their children will have this disease as well.
HEDS is painful and weird, but it’s not life-threatening. The vascular form of EDS is very scary and very dangerous, but I do not have that form. I will only be able to pass on the form that I currently have according to this: “It is worthwhile to emphasize to affected individuals and family members that EDS, hypermobility type does not evolve into any of the other types, either in the affected individual or in their offspring, and that the hypermobility type does not confer increased risk for early mortality.” I sincerely believe that I will be doing the right thing by having children. I am very at peace with this decision and so is Honey. In regards to how the news of the HEDS will impact my body’s ability to carry a baby… I already knew any pregnancies would be very hard and painful, now I have a better idea of what to expect. Again, I’m completely at peace with the thought of bringing a baby into the world, although at the moment I’m a bit concerned about picking the right timing. I’m gonna need a lot of help during the pregnancy and then even more once a baby is born, so Honey and I need to be in a place (financially and literally) where we can make that happen. But… I had a beautiful spiritual experience the other evening (before I received the new diagnosis) while taking a much-needed soak in the tub. I felt loved, comforted, and blessed for wanting to conceive. So… who knows? Maybe there will be little people in the near future, and I’ll be their stretchy Momma. 🙂
The doctor did express concern about a potential heart problem associated with HEDS and had me get an ultrasound of my heart (echo-cardiogram). I had that done on Monday and am nervously awaiting the results. A heart issue could potentially impact my ability to carry a child (more than the rest of my condition)… so that has me worried. Will let you know when I have an update.
An Open-Minded Journey 