Proactive

Dr Burt is a hard man to tie down just to chew the fat about stuff.  He is always on the go and busy as a man can be.  So when I had my bone marrow biopsy done I decided that it was a good time to tie him down and ask a him a couple of questions.  After all it is not like he could just up and leave half way through performing a medical procedure.

Now I have a list of questions as long as your arm for Dr Burt, but I thought I would just start with one of them as time was of the essence and it is easy to be distracted when you have someone drilling a hole in your butt.

So what was my first question?  Before I tell you I think it best to set a bit of a background as to how I got to want to ask this.  If you hadn't noticed I have blogged a lot recently about Rare Diseases and the Global Genes Project.  There are so many rare diseases out there that are severely debilitating and life changing.  Now I have two of them, but I feel that there are others out there that also suffer and there is very little out there to help them.  Now I want to help and I feel I might have found a way to help a few.  Now there are over 7000 rare diseases and I don't ever expect to be able to help all of them, but I do think there I might be able to help some and you've got to start somewhere right?

Enter Dr Burt.  His programs helps people with all kinds of autoimmune diseases and I am lucky enough to make it onto his CIDP program.  Now one of the issues that faces Dr Burt is that although the treatment is the similar for all autoimmune disorders, each disease needs its own protocol and each disease needs its own FDA approval to make it to trial.  That is a lot of work, needless bureaucracy and paperwork.

Now I felt that some people were missing out on getting in on a trial because they had a really rare disease that was autoimmune in nature but so rare it did not make it onto the protocol.  So I talked to Dr Burt about protocols for the really rare autoimmune diseases and in our short discussion we came up with idea of having one protocol for all the extremely super rare autoimmune diseases.  Independently, these diseases are too obscure for any real research into treatment options, but together, they could gain admittance onto Dr Burt's trial and potentially give them a treatment that could make a real difference in their lives.

I am a big fan of what Dr Burt has done/is doing.  Results so far have been impressive, and the more diseases that can be covered by his study and the more people that enter the study under all protocols, the faster they can get this treatment to be a part of mainstream medicine the better for all sufferers.  So in order to help Dr Burt I said I would compile a list of rare autoimmune diseases for him so he could get a start on it.

Now of course not every autoimmune disease can qualify.  If there is too much evidence that the disease is not autoimmune or the disease is not aggressive enough, it might not qualify.  But that is not for me or you to decide,  Dr Burt and his team, the ethics committee at North Western University and the FDA will make that decision.  But in order to put this list together I need your help.  The nature of a rare disease means that I probably haven't heard of it, so if you or someone you know suffers from an autoimmune disease please let me know what it is by leaving a comment on this post.

Please do not leave a message for me if your disease is on one of the lists below (If it is your disease is already on my radar) or your disease is not autoimmune or suspected to be autoimmune.  The lists are as follows:-

Diseases already covered by Dr Burt's trial-

1. Antiphospholipid Syndrome
2. Autoimmune Bullous Skin Disorders
3. Autoimmune-Relared Retinopaty
4. CIDP
5. Crohn's Disease
6. Devic's Disease
7. Idiopathic Inflammatory Myopathy Diseases
8. Leukocyte Adhesion Deficiency Type 1
9. Morphea
10. Multiple Sclerosis
11. Myasthenia Gravis
12. Optic Neuropathy
13. Primary Biliary Cirrhosis
14. Pulmonary Fibrosis
15. Rheumatoid Arthritis
16. Sarcoidosis
17. Scleroderma
18. Systemic Lupus Erythematosus
19. Systemic Necrotizing Vasculitis
20. Type 1 Diabetes
21. Critical Limb Ischemia

Other Autoimmune Diseases (courtesy of CIDPUSA)

1. Acute disseminated encephalomyelitis (ADEM) 
2. Alzheimers 
3. Alopecia areata
4. Ankylosing spondylitis
5. Aneurysms 
6. Arthritis
7. Antiphospholipid Syndrome  
8. Addison’s Disease
9. Autoimmune polyendocrinopathy
10. Hemolytic Anemia 
11. Inner Ear Disease 
12. Lymphoproliferative  Syndrome (ALPS)
13. Thrombocytopenic Purpura (ATP)
14. Autism or Autistic disorder 
15. Hemolytic anemia
16. Hepatitis
17. Oophoritis
18. Behçet's disease
19. Bullous Pemphigoid
20. Cardiomyopathy
21. Crohn's disease
22. Chronic Fatigue Syndrome
23. Dermatomyositis
24. Diabetes mellitus, type 1
25. Epilepsy Autoimmune
26. Kawasaki's Disease
27. Glomerulonephritis
28. Graves' disease
29. Goodpasture's syndrome
30. Guillain-Barré syndrome
31. Inflammatory bowel disease
32. Lupus nephritis
33. Multiple sclerosis
34. Myasthenia gravis
35. Myocarditis
36. Parkinson diseases
37. PANDAS
38. Pemphigus/pemphigoid
39. Pernicious anemia
40. Polyarteritis nodosa
41. Polymyositis
42. Primary biliary cirrhosis
43. Psoriasis
44. Relapsing Polychondritis
45. Rheumatic fever
46. Rheumatoid arthritis
47. Sarcoidosis
48. Scleroderma
49. Sjögren's syndrome
50. Systemic lupus erythematosus
51. Thyroiditis
52. Ulcerative colitis
53. Uveitis
54. Vitiligo
55. Wegener's granulomatosis
56. Wilsons Disease

The following links may be useful to you:-

www.cidpusa.org

www.stemcell-immunotherapy.org

http://www.clinicaltrials.gov