Question about Umbilical Cord Stem Cells for RP

predentchick · Sep 6, 2004

Hey there! My husband has retinitis pigmentosa. He is looking into some therapy via umbilical cord stem cells. The procedure is done in England. They inject him with the cord's WBC and hopefully they go to his damaged eyes. (But you know this). My question is, what are the drawbacks and can this effect our children? I have had these questions answered but I am looking for as many opinions as possible. Thanks for your time!

predentchick · Sep 6, 2004

any thoughts at all? I just need some general discussion on this topic. Thx.

Retinamark · Sep 6, 2004

predentchick said:
any thoughts at all? I just need some general discussion on this topic. Thx.

Sorry, I've never heard of this Rx. What hospital is it offered at? If it is a reputable hospital like Moorfields, St Thomas' or Great Ormond St, it would be worth taking seriously.
Do you have any references from the literature that describe the theory behind it?

predentchick · Sep 6, 2004

The company is called BioMark International. They have a website but I don't have the URL handy. They have had success restoring vision in glaucoma and sight loss due to MS. They are out of europe. Anyone please feel free to email us at [email protected]. Thanks for any imput whatsoever!

Retinamark · Sep 6, 2004

predentchick said:
The company is called BioMark International. They have a website but I don't have the URL handy. They have had success restoring vision in glaucoma and sight loss due to MS. They are out of europe. Anyone please feel free to email us at [email protected]. Thanks for any imput whatsoever!

I would be very careful. I haven't heard of BioMark International & there are a few things on their website which make me a little suspicious. Most of their references are to general newspaper articles, not scientific literature.
They may be very good, but there are a lot of people out there who exploit people like your husband, to make money.

Be very suspicious of their claim to cure optic neuritis - most people who lose vision from optic neuritis, regain it over the following few weeks/months, without any treatment at all.

They definitely cannot cure glaucoma - I'm quite sure that there have not been any proven reports of humans who have lost vision from glaucoma, regaining this vision.

Why not see an RP specialist in the US before going to england. If you do go to England, I would suggest getting a 2nd opinion from the RP unit at Moorfields Eye Hospital.
Best wishes

predentchick · Sep 6, 2004

Thanks so much. We have actually seen 2 RP specialists. One at the UCLA med. center (Heckenlively) and he has also been to the Moran Eye Center in Utah. They all say there is no cure and no treatment to prevent further loss. It is just so hard to not jump on something that claims they can possibly restore vision.

I am so glad you brought up these points. They have a list of voluntary patients who provide testimonials, but it is easy to get people to claim they have had the treatment. I just hate it because of RP's nature. My husband will eventually lose his sight and there is nothing in the US for treatment. His brother also has RP and his is a lot worse, so we see the path ahead. It is just scary! We will for sure do our research through and through before proceeding. Thanks for your time.

Andrew_Doan · Sep 7, 2004

predentchick said:
Thanks so much. We have actually seen 2 RP specialists. One at the UCLA med. center (Heckenlively) and he has also been to the Moran Eye Center in Utah. They all say there is no cure and no treatment to prevent further loss. It is just so hard to not jump on something that claims they can possibly restore vision.

I am so glad you brought up these points. They have a list of voluntary patients who provide testimonials, but it is easy to get people to claim they have had the treatment. I just hate it because of RP's nature. My husband will eventually lose his sight and there is nothing in the US for treatment. His brother also has RP and his is a lot worse, so we see the path ahead. It is just scary! We will for sure do our research through and through before proceeding. Thanks for your time.

What type of RP does your husband have (i.e., X-linked, autosomal dominant, or autosomal recessive)? Each type of RP acts differently and has a different prognosis. Many RP patients do not become completely blind. Some RP is slow to progress, and I have seen patients who had 20/25 vision with 20 degree fields that stabilized for over 30 years. Because RP can be slowly progressive, patients can adapt to their visual impairment and constricted fields.

MPS · Sep 7, 2004

In the UK, the British Retinitis Pigmentosa publishes a newsletter that includes information about advances in research and management. If there is a similar group in the USA, and if you're not already a member, then I would recommend you consider contacting them. For many people, this is the best way of staying informed - others choose to use information gleaned from newsletters to give them the background knowledge for further inquiries. Perhaps Andrew Doan or another poster based in the USA could pass on the details of a US counterpart of the British Retinitis Pigmentosa Society.

I should point out that it is unlikely that your husband would benefit significantly from the therapy you mention. There is little hard data supporting its efficacy, and it is not without its complications. Heckenlively is pre-eminent in the field of retinitis pigmentosa - it might be worthwhile taking your concerns to him, as he is more intimately acquainted with your husband's particular situation and concerns.

I wish you and your husband the best.

predentchick · Sep 7, 2004

Andrew_Doan said:
What type of RP does your husband have (i.e., X-linked, autosomal dominant, or autosomal recessive)? Each type of RP acts differently and has a different prognosis. Many RP patients do not become completely blind. Some RP is slow to progress, and I have seen patients who had 20/25 vision with 20 degree fields that stabilized for over 30 years. Because RP can be slowly progressive, patients can adapt to their visual impairment and constricted fields.

He (and his older brother) have the autosomal recessive. Dr. Heckinlively teased them about their parents being related! They have the least severe of the Usher syndromes. His brother's visual field in his R eye is minimal. My husband's is a little better but not by much. Right now my husband's degree fields are at 45 where his brother's are around 25. My husband also just found out he developed cataracts.

I am hoping they turn out like your patient with stable degree fields, even though they are not great. My husband, interestingly enough, follows his older brother's progress to a T. They developed cataracts at the same age (27), etc. So needless to say I am worried since his visual field is much worse. Anyhow. Thank you for your advice. My husband plans to present this questionable treatment to Dr. Heckenlively. Thank you for going into this field. Having a husband with RP is hard and having to deal with vision must be a challenging career. Thank your for your time into this field! God will bless you.

predentchick · Sep 7, 2004

MPS said:
In the UK, the British Retinitis Pigmentosa publishes a newsletter that includes information about advances in research and management. If there is a similar group in the USA, and if you're not already a member, then I would recommend you consider contacting them. For many people, this is the best way of staying informed - others choose to use information gleaned from newsletters to give them the background knowledge for further inquiries. Perhaps Andrew Doan or another poster based in the USA could pass on the details of a US counterpart of the British Retinitis Pigmentosa Society.

I should point out that it is unlikely that your husband would benefit significantly from the therapy you mention. There is little hard data supporting its efficacy, and it is not without its complications. Heckenlively is pre-eminent in the field of retinitis pigmentosa - it might be worthwhile taking your concerns to him, as he is more intimately acquainted with your husband's particular situation and concerns.

I wish you and your husband the best.

Thank you for this valuable information and your best wishes.

7ontheline · Sep 8, 2004

Having just finished my retina rotation with Dr. Gerald Fishman, I feel pretty confident in agreeing with Dr. Heckenlively's assessment. There is currently NO proven treatment for RP - there is not really anything in the U.S. that is even in Phase I, I think. There is a lot of research going on in this area, but there is nothing yet. This random injection of stem cells, hoping they work in the eye sounds pretty sketchy to me.

Andrew is right about the risk of visual loss. In a large, multi-center study headed by Dr. Fishman, exactly 6 patients out of 2000 RP patients ended up completely blind (No Light Perception). Most retained at least some vision. The autosomal recessive form also tends to be milder than the X-linked form. Personally, I think you and your husband would be better off making sure that you have all the available aids and information to help with daily activities rather than jumping at unproven experimental procedures. A low-vision clinic could be very helpful, and would maximize your husband's use of his current visual potential. RP is indeed a difficult diagnosis to deal with, and I wish you and your husband the best of luck.

predentchick · Sep 8, 2004

Thank you so, so much for your reply. Everyone's imput has been so valuable to us. What is actually a "low vision clinic?" We live in the Las Vegas and/or Utah areas. Is there a specific place we need to go?

Andrew_Doan · Sep 9, 2004

predentchick said:
Thank you so, so much for your reply. Everyone's imput has been so valuable to us. What is actually a "low vision clinic?" We live in the Las Vegas and/or Utah areas. Is there a specific place we need to go?

If your husband's central vision is good (i.e., if his cataracts are mild and he does not have cystoid macular edema), then low vision aides will not help much because he still has 40 degree fields. However, if his visual acuity is affected, then a low vision examination may be of benefit. Low vision doctors are usually optometrists who specialize in devices and services to assist the blind and visually impaired. Nevada offers low vision services. I don't know how good they are, and you definitely want to avoid clinics that will try to give your husband a white cane and dog when he has 40 degree fields and fairly good central vision. Good luck to you and your husband.

http://detr.state.nv.us/rehab/reh_bvi.htm#Bureau_of_Services

If you are close to the University of Utah, then I suggest going here:

http://uuhsc.utah.edu/healthinfo/adult/eye/lowvis.htm

If you want to come to Iowa, then I encourage you to see Ed Stone, MD, PhD in the retina clinic and Mark Wilkinson, OD in our low vision clinic.

http://webeye.ophth.uiowa.edu/dept/BIOGRAPH/stone.htm

http://webeye.ophth.uiowa.edu/dept/BIOGRAPH/wilkinson.htm

MPS · Sep 9, 2004

There is one thing that I might like to add about low vision aids - if your husband is having difficulties adapting to his constricted field of vision, he may benefit from a field expanding device. These are literally telescopes that are held in reverse. Some people with restricted fields do find them useful; however many do not.

7ontheline · Sep 11, 2004

Oops - the replies are correct, I didn't mean that your husband definitely needed low-vision eval right away. I just meant that you might want to keep it in mind for now or the future instead of questionable treatments.

Question about Umbilical Cord Stem Cells for RP

predentchick

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predentchick

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Retinamark

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predentchick

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Retinamark

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Andrew_Doan

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MPS

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predentchick

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Andrew_Doan

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