Another perspective on the treatment Epidermolysis bullosa

Patrascu I.Va,b)., Chiurciu Ca)., Lucica Simaa)

We are a research team dealing with a new human immunological treatment system. We are working on antibiotic resistance control by using immunologically active proteins (IAP). Since two years ago, our concern has been the immunological treatment of skin diseases, particularly psoriasis vulgaris, against which we have obtained very good results. We are now treating 8 children suffering from Epidermolysis bullosa. The results are interesting enough to draw the attention of EB specialists.

Basically, by using IAP, we are in accordance with the latest requirements for using biological products for psoriasis treatment, namely for the replacement of biological drugs prepared on mammalian molecules, including human molecules.

Such international requirements are:

  • Small molecular weight, below 5000 Da.
  • Oral administration
  • No adverse reactions
  • No idiotype reactions
  • Efficacy

We shall also talk about IAP, a protein product with an interesting structure.

Psoriasis and EB treatment is immunological, involving orally-administered IAP for the general and topical treatment of the digestive tube. We use the same products for the respiratory tract (aerosols) and local treatment of skin, eyes and nose.

As far as psoriasis and EB concern, we consider them both diseases of the entire organism and of the immune system in which the genes are related to patients’ sensitivity. This statement is supported by animal experiments. We participated in some of these experiments during 1970-1985 together with specialists, emeritus professors from Cornell University, Ithaca NY, USA. The studies were coordinated by Rendl Colle. A part of these experiments were done in my laboratory on chickens from genetically determined lines.

The results we obtained for psoriasis treatment using IAP and the preliminary results in the EB treatment as well, enable me to bring such results to the public and express my point of view on this regard.

In this first letter I wish to bring the EB research up for discussion.

In the second letter I will talk about EB and psoriasis as two diseases of the entire organism, with clinical symptoms on the skin.

In the third letter I will present a part of our results regarding the immunological treatment (IAP) of psoriasis and EB.

Once with this letter I am thinking about organizing a Brainstorming meeting on the first EB treatment results and immediate reorientation of the way we have to deal with the disease, patients, their families and their integration into society.

Such a meeting can be organized in our laboratory only (for personal medical reasons), at ROMVAC S.A. in Romania. On this occasion we can talk about treatment, IAP and the specialists shall have the opportunity to see the children under treatment here or at home.

Such a meeting can also open the door for new optimistic guidelines for EB treatment.

We must take into consideration that EB evolution begins from the intrauterine stage, with consequences on the entire organism;

The second matter is if we can track down the genetic combination in the parents and if treatment is necessary for the mother and for the fetus, indirectly.

We should introduce a new set of concepts like a new EB definition in the disease research and treatment, such as clinical healing, healing of various systems (digestive, respiratory, nervous, skin). The treatment of skin should focus on the occurrence of blisters, treatment sensitivity, appearance of skin after blisters. A definition should be given to the general and topical treatment, curative and preventive treatment, including a recovery treatment. This program must involve the family as well, particularly the mother who suffers together with the child.

IAP treatment is very likely to be used as supporting treatment before and after surgical interventions.

Our concern should be given to the accurate definition of the disease and to the terminology of the curative or preventive treatment. What is a healed digestive tube, respiratory tract, skin? What do we mean by disappearance of blisters, occurrence of mildly developing or rapidly healing blisters? We must define and be familiar with the new skin of IAP-treated children suffering from EB. We should give a thorough definition of the treatment in order to prevent other blisters from occurring and of secondary treatments (mouth, teeth, eyes). We have to emphasize that we treat generalized EB patients by oral administration of IAP, a treatment targeting all tissues and organs of the human body and in the second phase, a topical treatment of the eyes, nose, digestive tube etc. We must decide the topical treatment of the respiratory tract which concerns the nasal mucosa, sinus mucosa, pharynx, trachea and lungs.

I am not ready to discuss about this, but we should also focus on the prevention and treatment of bones, joints, fingers (the way they are).

What we have to do next is to engage into another activity: the mental and physical recovery of the patient and his/her integration into family and society.

At the same time, we have to pay attention to the mothers as well (the main physician of the EB child).

All of us must accept that there are solutions and examples that give us hope and positive thinking.

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