Here are some links complete with information explaining my conditions & current treatments. I also included some blogs written by my spoonie friends with the same conditions. I bolded & put stars ⭐️ next to my newest diagnoses. ♥
- My Primary Immunodeficiency – Common Variable Immunodeficiency & the medications I receive biweekly.
What is Common Variable Immunodeficiency?
- vEDS or Vascular Ehlers Danlos Syndrome ⭐️
- Clotting/Platelet Dysfunction– we currently have no real name for this yet. We simply know I have delayed clotting times and something weird going on with my platelets sometimes. So all my medical procedures/surgeries going forward must be done under the supervision of my Hematology team who will constantly monitor my clotting time & platelet counts before, during and after for at least two days.⭐️
- Epilepsy: it’s been FIVE years now but I forgot to update so I guess I gets a star. ⭐️
- hEDS or Hypermobility Ehlers Danlos Syndrome & conditions caused by it
Botox for Treatment of Chronic Migraines
- My friend Rachel does an amazing job explaining EDS, chronic migraines & the brain fog I so often talk about in these three blog entries.
https://positivelyrachel.com/2016/12/30/chronic-migraines-more-than-just-a-headache/
https://positivelyrachel.com/2017/02/28/ehlers-danlos-syndrome/
https://positivelyrachel.com/2017/01/17/brain-fog/
- Dystautonomia, Postural Orthostatic Tachycardia Syndrome. I had central lines for almost 5 years so I could receive daily IV saline and then I also used it for IV Benadryl to treat frequent anaphylaxis multiple times a day
What is Postural Orthostatic Tachycardia Syndrome
- Gastroparesis or Partial paralysis of stomach
- Superior Mesenteric Artery Syndrome
What is Superior Mesenteric Artery Syndrome?
- Celiac Disease
- Mast Cell Activation Syndrome
What is Mast Cell Activation Syndrome?
- Eosinophilic Esophagitis (EoE), Eosinophilic Gastroenteritis (EGE) and Eosinophilic Gastritis (EG)
What are Eosinophil- Associated Diseases
- Idiopathic Angioedema
- Food Allergies – Corn, Onion, Garlic,
Food hypersensitivity by inhalation
- Endometriosis
- Adenomyosis ⭐️
- Iron Deficiency Anemia ⭐️