Christine Lorencen Bernstein
Donation protected
Everyone
I wanted to share some important news with you.
Some of you may already know that our friend, Christine, is battling a rare genetic condition called Ehlers Danlos Syndrome or EDS. It's a condition where the body produces faulty collagen. Collagen acts as a glue that gives strength to muscles, ligaments, tendons, organs, skin so herbody is basically falling apart inside and out because of the faulty collagen.
While there is no cure for EDS, surgeries, braces and lots of physical therapy are the only options for treatment. She has been fighting this disease for about 15 years and is now confined to wearing a body brace (as you see in her picture) due to her diaphragm stopping and the instability in her neck. Her specialist is running out of ideas on how to treat her and she is not being considered for any other surgeries at this point.
Reality check!
Over the last few years, she has accumalated over $50,000 in medical related debt due to the costs of surgeries, therapy, travel, lodging etc that were not covered by insurance. The majority of the debt is from the neurosurgeon fees as he did not take any insurance and had to be pre-paid in order for her to have surgery.
There are NO EDS specialists in Michigan and the primary reason the family must travel to see doctors in places as New York or even Maryland. Even common office exams such as an MRI, have to be done on a upright MRIs, and there are NO upright MRIs in Michigan either. In the meantime, she will continue to get IV fluids locally and monitor her swallowing and breathing issues.
Her husband, Gordon, is working two jobs to keep the everyday bills paid but not enough to pay these too. It would be a blessing to her family if this could be paid in full, but even paying off a large portion of it would be a great relief.
Going Forward:
Thankfully she is on medicare now and will cover most of her expenses going forward. Unfortunitely, the list of specialists in the country are few and (as previously stated) her current one is running out of long-term options to treat her. Pray for new treatments, specialists strength and encouragement for her and her family.
How can you help?
Prayfully consider what you can do today to help Christine and her family. The math is pretty simple. If 100 people donated 500.00, the debt would be paid in full. 100 donations of 250.00 would meet our campaign goal.
All funds received will go towards:
Paying off credit card charges for hotels, gas, food etc from previous surgeries out of state
Paying co pays and deductibles for surgeries, procedures, test and office visits
Co-pays each month for her 15 prescriptions
Future travel expenses for continuous treatments
***They also need to make some changes to their house in order for it to be handicapped accessible. It is an older home and she is unable get her walker or wheelchair into the bedroom or bathroom because doorways are too small.
Christine wanted to share a list of her surgeries/ procedures and dates in the last 7 years.
Surgeries
11/16 tape failed and back to aspirating and my diaphragm is stopping
2/28/17 radiofrequency ablation done on left side of back at L1-S1to prevent pain
2/21/17 radiofrequency ablation done on right side of my back at L1-S1 to prevent pain
11/29/16 Second nerve block on L4/5 & L5/S1 to try and control pain
11/15/16 First nerve block on L4/5 & L5/S1 to try and control pain
8/2/16 jaw splint received to prevent jaw dislocation.
9/29/16 sniff test to show diaphragm not working properly and video swallow test done to show aspiration
6/13/16 A 3 day hospital stay from a seroma caused from my tethered cord surgery
6/1/16 surgery to release my 2nd tethered spinal cord
5/3/16 Bronchscope to recheck on tracheobronchomalacia before surgery
6/9/15 Bronchoscope to diagnose/see how bad tracheomalacia is. Diagnosed with bronchomalacia too
6/1/15 Diagnosed tracheomalacia by CT scan
9/29/15 port in chest placed
Oct - Nov 15 pulmonary rehab
12/15/15 full modified neck fusion with hardware and tape
12/16 /14 surgery to release tethered spinal cord
6/7/13 Bronchscope to check on trachea and collapsed lung
6/14 /13 fusion of C5/6
8/6/12 occipital to C2 fusion
6/23/11 arthroscopy of hip to clean bursa and put in an IT band window
9/10 faulty gall bladder removal due from eds
12/02 Diagnosed with Hypermobility Ehlers Danlos Syndrome
I wanted to share some important news with you.
Some of you may already know that our friend, Christine, is battling a rare genetic condition called Ehlers Danlos Syndrome or EDS. It's a condition where the body produces faulty collagen. Collagen acts as a glue that gives strength to muscles, ligaments, tendons, organs, skin so herbody is basically falling apart inside and out because of the faulty collagen.
While there is no cure for EDS, surgeries, braces and lots of physical therapy are the only options for treatment. She has been fighting this disease for about 15 years and is now confined to wearing a body brace (as you see in her picture) due to her diaphragm stopping and the instability in her neck. Her specialist is running out of ideas on how to treat her and she is not being considered for any other surgeries at this point.
Reality check!
Over the last few years, she has accumalated over $50,000 in medical related debt due to the costs of surgeries, therapy, travel, lodging etc that were not covered by insurance. The majority of the debt is from the neurosurgeon fees as he did not take any insurance and had to be pre-paid in order for her to have surgery.
There are NO EDS specialists in Michigan and the primary reason the family must travel to see doctors in places as New York or even Maryland. Even common office exams such as an MRI, have to be done on a upright MRIs, and there are NO upright MRIs in Michigan either. In the meantime, she will continue to get IV fluids locally and monitor her swallowing and breathing issues.
Her husband, Gordon, is working two jobs to keep the everyday bills paid but not enough to pay these too. It would be a blessing to her family if this could be paid in full, but even paying off a large portion of it would be a great relief.
Going Forward:
Thankfully she is on medicare now and will cover most of her expenses going forward. Unfortunitely, the list of specialists in the country are few and (as previously stated) her current one is running out of long-term options to treat her. Pray for new treatments, specialists strength and encouragement for her and her family.
How can you help?
Prayfully consider what you can do today to help Christine and her family. The math is pretty simple. If 100 people donated 500.00, the debt would be paid in full. 100 donations of 250.00 would meet our campaign goal.
All funds received will go towards:
Paying off credit card charges for hotels, gas, food etc from previous surgeries out of state
Paying co pays and deductibles for surgeries, procedures, test and office visits
Co-pays each month for her 15 prescriptions
Future travel expenses for continuous treatments
***They also need to make some changes to their house in order for it to be handicapped accessible. It is an older home and she is unable get her walker or wheelchair into the bedroom or bathroom because doorways are too small.
Christine wanted to share a list of her surgeries/ procedures and dates in the last 7 years.
Surgeries
11/16 tape failed and back to aspirating and my diaphragm is stopping
2/28/17 radiofrequency ablation done on left side of back at L1-S1to prevent pain
2/21/17 radiofrequency ablation done on right side of my back at L1-S1 to prevent pain
11/29/16 Second nerve block on L4/5 & L5/S1 to try and control pain
11/15/16 First nerve block on L4/5 & L5/S1 to try and control pain
8/2/16 jaw splint received to prevent jaw dislocation.
9/29/16 sniff test to show diaphragm not working properly and video swallow test done to show aspiration
6/13/16 A 3 day hospital stay from a seroma caused from my tethered cord surgery
6/1/16 surgery to release my 2nd tethered spinal cord
5/3/16 Bronchscope to recheck on tracheobronchomalacia before surgery
6/9/15 Bronchoscope to diagnose/see how bad tracheomalacia is. Diagnosed with bronchomalacia too
6/1/15 Diagnosed tracheomalacia by CT scan
9/29/15 port in chest placed
Oct - Nov 15 pulmonary rehab
12/15/15 full modified neck fusion with hardware and tape
12/16 /14 surgery to release tethered spinal cord
6/7/13 Bronchscope to check on trachea and collapsed lung
6/14 /13 fusion of C5/6
8/6/12 occipital to C2 fusion
6/23/11 arthroscopy of hip to clean bursa and put in an IT band window
9/10 faulty gall bladder removal due from eds
12/02 Diagnosed with Hypermobility Ehlers Danlos Syndrome
Organizer and beneficiary
Rodney Wilkinson
Organizer
Franklin, TN
Christine Bernstein
Beneficiary