Lisa's Story
ฝัง
- เผยแพร่เมื่อ 25 ก.พ. 2016
- Lisa Kozempel Erdely tells the story of her mother's struggle before being diagnosed with pheochromocytoma.
Visit www.pheoparatroopers.org for more information on pheos and paras, and how you can help fight this cancer.
You can also support rare disease by donating to Lori Kozempel's Memorial Fund:
salsa3.salsalabs.com/o/…/dona...
Please select “Pheochromocytoma” on the research fund drop down select option. Then Click “Dedicate my donation to Lori Kozempel.” To donate by mail, please send a check to the NORD Connecticut office:
National Organization for Rare Disorders
55 Kenosia Avenue
Danbury, CT 06810
Or to donate by phone, please call to Mary Talbot who is an Accountant at NORD:
(617) 934-6387
Thankyou Lisa for your honest and heartfelt video. You are a beautiful soul.
Lisa, I’ve just been diagnosed with this after being told my symptoms were due to menopause too. They are just now scheduling me to start tears/scans etc after doing my blood work and matching my symptoms my Rhuematoid Arthritic dr stated he has other patients doing exactly what I’m doing and it turned out to be this. I’ve been have sweats all the time, increased blood pressure and heart rate. Attacks that last 10-15 min where I have a huge adrenaline rush hit my body. Face and hands start tingling. Swelling in my lips, throwing up (during attacks) increased hr, etc. I feel like I’m going to die. Afterwards I’m exhausted because of it all. How is your mom? I would love to talk with her as I’m starting this journey and I’m afraid. I’m 51 and I have so much to live for.
Thanks for sharing. God bless you and your family.
I wish I could give this lovely young woman a hug. My heart aches for her, and I'm sure she made her mother so proud and happy. I'm trying to fight this, and hopefully then my baby girl will never know that pain
How can we help you in your fight? Let us know here, or send a note through our web site. We look forward to hearing from you.
Hot flashes, irritability, anxiety, racing heart, shaking, dizzy ness, weight loss, no appetite, sleeping only 4 hours, tingling in forearms. Starts on waking...
Doing tests for Pheochromocytoma now.
Let us know if we can provide support in any way, and best wishes!
Wow.. nailed the symptoms!
Pheo Para Project thank you. I’d like to go to the NIH as my diagnosis had been delayed for 18 mos. I understand that they have better and more comprehensive diagnostic tools. Do you have any suggestions on what is needed to be accepted to the NIH for pheo evaluation?
@@Fedko3037 I have same symptoms what did u get diynos with pls
Yep. Lying in bed, wake, fine. Stand up and walk to kitchen and find out if it’s going to be one of those days. BP shoots past 200 again. Anxiety. Shaking internally. Doctor put it together last week. Blood tests done on Friday. Started me on tumor meds. Here we go. I’m scared. I can feel something is wrong and have for years.
Doctors should be more aware of the symptoms of pheochromocytoma
and make the connections for early testing and treatment before it's too late.
It may be "rare" but, it occurs much too often.
You mentioned a facebook group, what is a link or name of it.
Our Facebook Page: facebook.com/PheoParaProj/
The Facebook Pheo/Para support group: facebook.com/groups/pheoparasupportgroup/