Transcript Hypoparathyroidism - Legislative Information Systems

Hypoparathyroidism
(hypoPARA) – A RARE, COMPLEX DISORDER
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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
Disclaimer
Prepared by non-medical personnel
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The Clinical Perspective
Understanding the Disorder
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The Basics
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4 peas size glands
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Para means “next to”, they are
located next to the thyroid gland
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Regulates calcium, phosphorous
and vitamin D
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Produces and regulates a
hormone called PTH
The Parathyroid Glands
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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.
The Parathyroid Glands
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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.
Calcium Regulation
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hy·po·par·a·thy·roid·ism
/‚hīpō‚perƏ`THīroi‚dizƏm/
Hypoparathyroidism is a rare disorder in which the
parathyroid glands do not produce any or enough
parathyroid hormone (PTH).
HypoPARA
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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
HypoPARA
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Symptoms
Neuromuscular
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Tetany – contraction
in muscles in the
hands, feet and
bronchospasms
Tingling or burning
sensations
Muscle spasms and
twitching
Other Symptoms
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Kidney Stones
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Cataracts
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Hair Loss
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Hearing Loss
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Bone Changes
Neurologic
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Anxiety
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Depression
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Fatigue
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Seizures
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What triggers the Symptoms
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Insufficient calcium or vitamin D levels
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Strenuous exercise
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Heat and humidity
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Anxiety of stressful situations
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Diarrhea, constipation or other intestinal conditions that keep a
person from absorbing their calcium effectively
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Changes in medications for other conditions
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Any illness that causes diarrhea, vomiting or loss of appetite
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Abnormalities in magnesium or phosphorus levels
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Menstruation
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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
Current Treatment
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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.
https://www.natpara.com/
Future Treatment
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The Patient Perspective
You are NOT Alone
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“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 . . .”
A Common Experience
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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.
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5 ER visits in 4 years, one in a ambulance, one five day hospital stay
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I take a minimum of 19 pills a day.
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At Kroger, I could not open my calcium bottle with my “claw” (tetany), the staff
would not help me.
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I need my husband, parents and sister to help me with simple daily tasks. They are
always on call, day and night.
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Managers and co-workers think I am a Drama Queen, exaggerating my symptoms.
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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.
Abbey’s Thoughts
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The Request
The State of Ohio
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We respectfully request that the State of Ohio
join the world in adopting each June 1 as the
World Hypoparathyroidism Awareness Day
Awareness
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