Hypoparathyroidism (hypoPARA) – A RARE, COMPLEX DISORDER 1

Disclaimer Prepared by non-medical personnel 2 This presentation was prepared in an effort to inform and bring awareness to the general public regarding hypoPARA. All information was compiled using information provided during medical visits, conferences, the internet and personal experiences as a patient and a caregiver. This presentation is not intended to provide a medical diagnoses, advice or treatment. Abbey Chafins and Cheryl Christ

The Clinical Perspective Understanding the Disorder 3

The Parathyroid Glands The Basics 4 peas size glands Para means “next to”, they are located next to the thyroid gland Regulates calcium, phosphorous and vitamin D Produces and regulates a hormone called PTH 4

The Parathyroid Glands The MAIN Purpose Regulation of the calcium level in blood system – EVERY minute of EVERY day When calcium levels go down, the parathyroid glands make PTH which goes to the bones and takes some calcium out (makes a withdrawal from the calcium vault) and puts it into the blood. When the calcium goes up, then the parathyroid glands shut down and stop making PTH. 5

Calcium Regulation Calcium provides the: electrical energy for our nervous system – the means for electrical impulses to travel along nerves electrical energy for our muscular system - muscles use changes in calcium levels inside the cells to provide the energy to contract strength to our skeletal system - bones serve as the storage system that we use to make sure we will always have a good supply of calcium. 6

HypoPARA hy·po·par·a·thy·roid·ism /‚hīpō‚per Ə `THīroi‚diz Ə m/ Hypoparathyroidism is a rare disorder in which the parathyroid glands do not produce any or enough parathyroid hormone (PTH). 7

HypoPARA Causes include: Postsurgical - injury or removal of the parathyroid glands Autoimmune disease - immune system rejects parathyroid tissues Genetics - born without parathyroid glands or with glands that do not function properly Cancer radiation treatments Idiopathic – cause is unknown 8

Symptoms Neuromuscular Tetany – contraction in muscles in the hands, feet and bronchospasms Tingling or burning sensations Muscle spasms and twitchingNeurologic Anxiety Depression Fatigue Seizures Other Symptoms Kidney Stones Cataracts Hair Loss Hearing Loss Bone Changes 9

What triggers the Symptoms Insufficient calcium or vitamin D levels Strenuous exercise Heat and humidity Anxiety of stressful situations Diarrhea, constipation or other intestinal conditions that keep a person from absorbing their calcium effectively Changes in medications for other conditions Any illness that causes diarrhea, vomiting or loss of appetite Abnormalities in magnesium or phosphorus levels Menstruation 10

Current Treatment Unlike diabetes, hypoPARA does not have a patient method to test calcium levels in the blood system. Until this year, hypoPARA was the only endocrine disorder that did not have a hormone replacement drug. People with the disorder must: rely on the onset of symptoms to try to control calcium levels try to replicate the calcium balance without PTH take enough calcium and vitamin D to avoid symptoms, but not too much to stress their kidneys manage the disorder with the goal of reducing the long term risk of complications including bone changes, calcium deposits, kidney stones, cardiac insufficiency and cataracts 11

Future Treatment NatPARA On January 23, 2015 the FDA approved a new drug called NatPARA. The drug was released for use in April. Natpara carries a boxed warning that bone cancer (osteosarcoma) has been observed in rat studies with Natpara. Natpara is only available through a restricted program under a Risk Evaluation and Mitigation Strategy (REMS). NATPARA was not studied in people who get sudden hypoPARA after surgery. 12

The Patient Perspective You are NOT Alone 13

A Common Experience “I was rushed to the ER. My body was locked from head to toe... he (surgeon) said it could only be a temporary condition.. my symptoms are still with me today... The tingling in my hands never goes away... While I have grown immune to that, the most difficult thing for me to deal with is the muscle pain... It comes on so quickly and takes a long time to go away... Daily activities are difficult... I could only hold my daughter for ten minutes at a time, I could not sit on the floor and play or give her a tub bath... FMLA has run out at work...” 14

Abbey’s Thoughts I am invisible. No one takes me or this disorder seriously. They confuse it with thyroid issues which are common and controlled – I have that, too. Just take your pills and you will be fine. 5 ER visits in 4 years, one in a ambulance, one five day hospital stay I take a minimum of 19 pills a day. At Kroger, I could not open my calcium bottle with my “claw” (tetany), the staff would not help me. I need my husband, parents and sister to help me with simple daily tasks. They are always on call, day and night. Managers and co-workers think I am a Drama Queen, exaggerating my symptoms. I feel guilty that my daughter does not have a normal Mommy and I feel I am becoming a burden to my family. This is a lifetime disorder and I will NOT let it control me. My commitment is to make a difference by educating and helping others cope with their struggles. 15

The Request The State of Ohio 16

Awareness We respectfully request that the State of Ohio join the world in adopting each June 1 as the World Hypoparathyroidism Awareness Day 17