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Has Fibrodysplasia Ossificans Progressive. Feeling helpless. Suggest a solution?

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General & Family Physician
Practicing since : 2005
Answered : 2408 Questions
My name is Carol Dixon. I have a grandson that is 22 and his name is XXXXXXX XXXX He has Fibrodysplasia Ossificans Progressive. Are there any doctors in New Orleans, LA that deal with this disease? I feel like a helpless grandmother that cannot help him. He is trying to see another pediatrician so he can get XXXXXXX disability. Because he does not have insurance he has a long wait for an appointment due to the clinic he goes too. Dr. Grief, how can I help? Are there any benefits he is entitled to through the state or SS? Grandparents are on fixed income and I have almost depleted my savings trying to help family members. His mother works and step-dad is XXXXXXX disability due to drunk driver hitting him in 2002. Thank you for your time and help.
My Email address is YYYY@YYYY
Posted Wed, 30 Oct 2013 in General Health
Answered by Dr. Shanthi.E 10 hours later
Brief Answer:
details of specialists listed below

Detailed Answer:

I am extremely sorry about Alan's current health status, and about the pain that you are going through at this moment.

As you know, Fibrodysplasia Ossificans Progressive (FOP) is an extremely rare disease, and is debilitating.

You should see a doctor that specializes in pediatric orthopedics or orthopedics by itself, to be able to help XXXXXXX better.

I have listed below a few specialists who could help you with this in New Orleans, LA.


Dr. Raoul Rodriguez, MD
Orthopedic Surgery
1415 Tulane Ave, New Orleans, LA 0000
1415 Tulane Ave Suite 4, New Orleans, LA 0000

1415 Tulane Ave
New Orleans, LA 0000
(504) 588-5838 (Office)

Dr. XXXXXXX R. Billings, MD
1415 Tulane Ave Suite 4TH
New Orleans, LA 0000
(504) 988-5807 (Office)
(504) 988-3517 (Fax)

New Orleans, LA 0000
(504) 988-5191 (Office)

Tulane Metairie Multi Spec Clnc
4770 S I 10 Service Rd W Suite 101
Metairie, LA 0000
(504) 988-8050 (Office)

These doctors have vast experience and perform orthopedic surgeries more often than others perform.


I am sorry he does not have the insurance. I do not think FOP is covered under the state or XXXXXXX However, you could consult the local health advisory or health groups that could help you with this.

I am sure that XXXXXXX would soon find help and do better both physically and mentally.

I must appreciate your love and concern for your Grandson. He is a lucky boy!

I hope this information helps you.


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