About My Conditions

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?

What is IVIG?

  • vEDS or Vascular Ehlers Danlos Syndrome ⭐️

What is vEDS?

  • 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

What is EDS?

Craniocervical Instability

Occipital Neuralgia

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 Dysautonomia?

What is Postural Orthostatic Tachycardia Syndrome

What is a Hickman Catheter?

  • Gastroparesis or Partial paralysis of stomach

What Is Gastroparesis?

Symptoms of Gastroparesis

  • Superior Mesenteric Artery Syndrome

What is Superior Mesenteric Artery Syndrome?

  • Celiac Disease

What is 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

What is Angioedema?

  • Food Allergies – Corn, Onion, Garlic,

Corn Food Allergy

Hidden Corn Based Ingredients

Food hypersensitivity by inhalation

  • Endometriosis

What is Endometriosis?

    Adenomyosis ⭐️

What is Adenomyosis?

  • Iron Deficiency Anemia ⭐️

Infusion Treatment for Iron Deficiency Anemia

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