:confused: I am female of 23.(My Tragic Story starts)During the 3rd week of May 2001,as a result of “ Steven Johnson Syndrome” all my body became full of red and white blisters and ulcers with the following dominant indications.
1- Ulceration, inflammation in both the eyes, lips, tongue, mouth with soaring throat.
2-Temperature 104 F.H
3- No sleep
4- Thick Secretions of adhesive substance from esophagus through mouth.
5- Throat, tongue, lips full of ulcers and secretions
As the result of medication all the symptoms / signs started subsiding in a very slow mode. The treatment was carried out for one month. I became normal but eyes stood effected because of ulcers with the following problems.
1-Eyes could not be opened.
2- Ulceration in the both eyes
3- Pain, redness, irritation, burning
EXCLUSIVE TREATMENT OF THE EYES STARTS

The exclusive treatment of eyes started on 20-06-2001. It was diagnosed by different ophthalmologists as:-
1-Target lesions mucous membranes, symblepharon, ankyloblepharon
2-Bilateral dry eye
3- Conjunctival Scaring
4- L/E Corneal Ulcer
5- Conjunctiva adhesion formation With special direction, “No surgery at all”
6- Pan late keratits
Since then I am using artificial tears and tear gels permanently.

PRESENT SITUATION IN SIMPLE WORDS
1-Permanent Dry Eyes because of damaged lacrimal System of both the eyes.
2-White scar on the cornea of left eye because of healed corneal ulcer.. This eye is mostly dull with 20% vision
3- Frequent burning, redness and irritation.
4-Right eye has good vision.
PRESENT USE OF MEDICINES
1-Blink Fresh (Polyvinyl Alcohol 14 mg & Povidon 06 mg per ml)drops after
every 1-3 minutes at day time.
2-Optolube Ocular Lubricant(White Petrolatum 549.75 mg + Lanolin alcohol 20.0 mg + Chlorobutanol 5.25 mg
as preservative per mg) gel after 4 hours during sleeping
time and when required.
3- Suitable Antibiotic drops three days a week or during inflammation and irritation.

DILEMMA???

1-Are the tears ducts damaged permanently?
2-Can scar tissue be treated and vision may return.
3- Why the right eye is usually active causing burning , irritation etc. and L/E dull?
4-Whether grafting of Mucous Membrane by ocular plastic surgery can
restore the tear gland or lacrimal system.
5-Is the parotid duct transplant successful and solves the problem and to what extent and where available.
6- Is this disease treatable to the extent of cure or leading normal life?
7-Any treatment available in Pakistan or abroad .or any research is underway any where?

MALIHA NASEEM

[ {email address removed} ]

[ please carefully review the posting rules - no emails ]

[ please carefully review the posting rules - no emails ]

[ please carefully review the posting rules - no emails ]

Hello Nassem,

Where are you located?

Tear gland damage is goning to be difficult to restore. What I have read says that tears are produced from many different parts of the eye. So when they are sloughed off they don't return. Can you yawn and get some reflex tears? If you can then ducts are mostly open.

I don't think parotid duct surgery is successful. I have not read any repuftable surgeons doing this. I did read about a surgeon transplanting few lobules of salivary gland from lower lip and placing it under the upper eyelid.

I am sorry to hear of the damage done to your eyes. I can only give you advice about the scarring on the cornea. I too had an ulcer which led to a large scar on my cornea covering my pupil. I had this scar for over 30 years with no change. The only way for correction is to have a cornea transplant. Once you have the transplant your vision will be as it was before the scarring.

I would not advise having a transplant if there is any chance of a recurrence of the Steven Johnson outbreak.

I hope you are able to find answers to your health problems.

They make a sceral lens, which is a specially designed contact lens that helps heal the damaged done from Steven Johnsons Syndrome. Search for them on ******.