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The Healing Blossom

The Healing Blossom

Join me on my healing journey!
I’m raising awareness about very underdiagnosed medical conditions.

The Healing Blossom

3 days ago

The Healing Blossom
Last chance to sign up for FDRS in Atlanta, GA!I’m honored to be presenting at the FDRS Conference this weekend! 🎤✨ My talk, “Lipedema & Plant Toxins: A Patient’s Journey to Healing”, will dive into the hidden impact of plant compounds on chronic illness.For years, I followed every “healthy” diet recommendation—piling my plate with superfoods like spinach, almonds, sweet potatoes, and chia seeds—thinking I was nourishing my body. Instead, I was unknowingly fueling my pain, inflammation, and Lipedema progression.What changed?When I finally removed high-oxalate, high-alkaloid plant foods and embraced a low-oxalate, Carnivore diet, my pain levels dropped, my mobility improved, and I finally began to heal.At FDRS, I’ll be sharing:✅ The science behind plant toxins ✅ Why “superfoods” aren’t always super for everyone✅ My personal journey ✅ How dietary changes gave me my life backI can’t wait to share this message! If you’ve struggled with pain, inflammation, or stalled progress despite "doing everything right," I hope this information helps you like it helped me.🚨 Last Chance to Register for FDRS 2025! 🚨We’re just 1 week away from FDRS 2025 where we’ll come together to learn, connect, and advance awareness for lipedema, Dercum’s disease, Madelung's disease, and Familial Multiple Lipomatosis. Whether you’re attending in person or virtually, this event is your chance to gain valuable insights and hear from top experts in the field. ✅ Only 10 onsite spots left – act fast before they’re gone!✅ Virtual attendance available – join from anywhere!✅ Cutting-edge research, expert speakers, and the latest medical updates✅ CME available for medical professionals. Don’t miss out! Secure your spot today before registration closes.🔗 Register now: bit.ly/FDRS2025#FDRS2025 #Lipedema #DercumsDisease #madelungsdisease #familialmultiplelipomatosis ... See MoreSee Less

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The Healing Blossom

1 week ago

The Healing Blossom
If you'll be un Atlanta, GA - please sign up for this study. They are looking for people with Lipedema, and without. Are any of you participating?The Lipedema Foundation is launching a dedicated biobank to support research into the causes, progression, and potential treatments for Lipedema. Biobanks collect, store, and share biological samples and data to support scientific research, and they are foundational tool to advance medical discoveries. We invite females with Lipedema and those without to contribute to this critical research effort.Location: Crowne Plaza Atlanta Perimeter at Ravinia, Atlanta, GADates: March 20, 21, and 22, 2025Participation: Blood and urine sample collection, an exam for research purposes, and a surveyIf you are attending the FDRS Conference and/or will be in the Atlanta area, plan to arrive early to participate on March 20 or 21.Register to participate and check out FAQ’s at lipedema.org/liveresearch ... See MoreSee Less

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The Healing Blossom

3 weeks ago

The Healing Blossom
✨ Today is Rare Disease Day – Raising Awareness for FOP & ACVR1 Variants ✨A couple years ago, I discovered that I have a variant on the ACVR1 gene, the gene responsible for Fibrodysplasia Ossificans Progressiva (FOP)—one of the rarest and most painful and devastating diseases, where soft tissue turns into bone. But because I don’t have the classic features (such as short big toes or visible ossification), my geneticist dismissed it as irrelevant to my chronic pain and mobility issues.However, my own research into FOP variants made me realize that I had many of the other symptoms:✔️ Scoliosis (developed at age 11)✔️ Tight, stiff muscles and chronic pain (severe by age 25)✔️ Hip Dysplasia (diagnosed age 45)✔️ Major pain flares after DTaP vaccines, surgeries, and injuriesDetermined to find answers, I reached out to the IFOPA (International FOP Association), and they connected me with a leading FOP specialist in the U.S. To my surprise, he responded immediately and scheduled a telehealth visit. In that visit, he confirmed that my symptoms are caused by my ACVR1 variant—and it’s possible that all of my conditions, including hypermobility, Familial Multiple Lipomatosis, and other fibrotic tissue (maybe my Lipedema), could be linked to this variant.The problem? My variant is so rare, it doesn’t even have a name yet.It was only found through a Connective Tissue Panel from Invitae. It’s currently classified as a Variant of Unknown Significance (VUS)—meaning other geneticists might ignore it, just like mine did.💡 Why This Matters for Rare Disease DayMost people born with classic FOP have short big toes, a red flag that should never be ignored, but it does get ignored. Early diagnosis and proper care can slow the disease’s progression. But FOP variants (like mine) may not have this telltale sign, meaning people can go undiagnosed for years.Classic FOP progresses aggressively, with most patients in a wheelchair by their 20s and rarely living past their 40s. Any injury, vaccine, or surgery can trigger permanent bone growth, sometimes leaving them unable to move overnight.I may not have ossification, but I have experienced severe pain and inflammation after surgeries, vaccines, and injuries. My doctors ignored my struggles. When I reported my first painful lipoma to my doctor at age 24, I was told "lipomas don't hurt". When I reported severe unilateral pain at age 25, I was told, "a few months of PT and chiropractic care will fix it". When I told my OB about the intense pain I had after the DTaP vaccine during pregnancy, she brushed it off—"Well, it's a geriatric pregnancy." When I reported severe fatigue, lipomas and pain all over after my pregnancy, I was told -"Hormones do weird things to our bodies, at least you can get out of bed". When I reported severe pain and visible swelling after my hip replacement, my surgeon told me, "The cure is exercise."Finding my ACVR1 variant gave me the validation that my pain is real, and it’s not my fault. But I know there are others out there with similar struggles, dismissed by doctors.💜 The FOP community has welcomed me with open arms, and I am so incredibly grateful. If you or someone you know has symptoms of an ACVR1-related conditions, but no diagnosis, don’t stop searching for answers.#RareDiseaseDay #RareDiseaseAwareness #FOPAwareness #ACVR1 #genetictesting #chronicpain #ChronicFatigue #RareDisease #MedicalGaslighting #lymphaticsystem ... See MoreSee Less

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