genetic disorders

I keep thinking "what can we do to help people, especially women when it comes to living with a genetic disorder?" It's something I've been thinking about for years. It is something that I am passionate about. I know there's resources out there but I think about what would be something that would've made me feel more accepted when I was a young girl. And I think the answer is, representation. We need to see more people with disabilities, chronic illnesses, and genetic disorders in the media. #NeurofibromatosisType1 #GeneticDisorders #ChronicIllness

I’d like to meet people who have or a relative or know someone who has skeletal dysplasia. My nephew suddenly stopped growing and he was diagnosed with this genetic disease. I’ve had 3 professional medical opinions and none have given me any hope to increase my nephew’s height. Has anyone found help to increase height? I’d certainly appreciate any guidance. Thank you! #GeneticDisorders

I don’t really know where I’m going with this thought, but I need to get it out.
Halloween is approaching. Almost all of my friends have children (I don’t). Lately, conversations with most of them consist of how annoyed they are that the kids can’t trick-or-treat etc. I truly do understand that missing out on traditions is disappointing but I literally want to scream because that’s what they’re complaining about right now. Meanwhile, I’m in and out of hospital with serious health issues, it’s impossible to get appointments with specialists that I need to see. I can’t go in to work at the job I love. I can’t see my family and my husband has taken on everything. I do feel bad for minimizing what they’re feeling but I would consider myself lucky if that’s what I was concerned about right now. I have begun to isolate myself. I’ve deleted my Facebook account and it’s not really my priority to respond to my friends. “Thinking positively” and “getting fresh air,” will not fix my heart, blood disorder, gastrointestinal issues and the list goes on. I can’t hear that anymore. I have an incredible husband and I’m very fortunate to still have my mom and dad and I suppose I should just be content with that for now. #SinusTachycardia #GeneticDisorders #Hypertension #Pain #MentalHealth #UlcerativeColitis #Clotting disorder #exhausted

My mother, in the last 10 or so years, has been diagnosed with 3 autoimmune diseases. The chances of them being passed down are very likely. I already have Major Depressive Disorder that I inherited from both sides of my family. I am also being treated for low thyroid function. Any advice for someone hoping to get ahead of it all? I feel like it’s all inevitable.

Have any of you had genetic testing? How does it work and what panels did you do? How many can you do? Was the information useful? I’m debating asking my doctor about if I’m eligible for a few reasons. The first being I have a serious chronic illness that has been undiagnosed for two years, and has taken a lot of my mobility and control over my body. Second is, my family has a large history of cancer. I know they don’t recommend it because of false positives, but there’s a lot of questions about my body I have I feel this might answer. Did it help any of you guys? #ChronicIllness #AutoimmuneImmunodeficiency #LivingWithPOTS
#GeneticDisorders